A Multi State Socio Economic Study of with Disabilities in India
The study analyses the intersection of gender with disability issues by combining economic and social analysis across four states in India by using both quantitative and qualitative methods including gender analysis of disability budgets.
This project looks at the status of women with disability in four states of the country; Andhra Pradesh, Chhattisgarh, Orissa and West Bengal. Women with Disability represent a confluence of two divides in the society; gender and disability. While each of the divides has been studied independently, if not in isolation, the two have rarely been studied together (Annexure I)
The report first traces the contours of the available demographic data form the 2001 census on the population of persons with disability in the country as a whole. A mapping of the incidence of disability indicated various clusters of low and high incidence. While the low incidence clusters may need a further cross check in terms of the quality and completeness of reporting, the clusters of high incidence definitely call for programme intervention. Three such clusters mainly emerge one across the central region of India, secondly in the South India and a third, relatively smaller cluster in the hilly regions of India. The analysis also makes a strong case for a more detailed analysis of the census 2001 data on disability, a separate project in itself. Analysis of the data on disability available from the NSSO data from the 58th round follows next. Even though the NSSO and the Census data are not comparable on account of methodological and definitional differences, NSSO data provides important insights into the causes of disability and age specific prevalence rates for different types of disabilities.
Data for the four states, its gender dimension, and incidence of different disabilities is analysed separately and presented through maps in order to identify clusters of high and low incidence. Implication of such clustering is examined. In doing this analysis a unique mapping programme has been used which allows mapping of different incidences of disability at the district level using the census data. Apart from identifying pockets of high and low incidence of disability and gender gaps thereof, this technique brings out the clustering of a lot of trends on disability. This will be of considerable help in programme design and implementation. The cluster of high incidence in terms of the disabled population is surprisingly similar across different disabilities and spans a belt consisting of the districts of Raipur and Bilaspur in Chattisgarh, Bolangir, Sambalpur and Bargarh in Orissa along with the scatter location of Ganjam in Orissa and South Twenty four Parganas in West Bengal. The pattern remains so, when we look for high incidence by gender.
A rigorous exercise has been done to find any spatial correlation between district level HDI and prevalence of disability. Though no substantial link has been found but the income component of human development is likely to be loosely associated with prevalence of disability.
The study then presents an analytical framework linking impairment and disability through the structure of barriers. It uses the capabilities framework of Amartya Sen to examine the disadvantage faced by a disabled person in the space of outcome i.e. how does the person function in the society in the context of her disability. Personal characteristics or the ‘endowments’ of a person with disability create difficulties in utilizing the commodities into certain outcomes. This can be mitigated to some extent using certain technologies; aids and appliances come under such category. However, a bigger problem that one faces is of the entitlement failures of the Persons with Disabilities (PWDs) in general and Women with Disabilities (WWDs) in particular.
It is submitted next that the disadvantage of gender and disability aggravate the existing gender gap among persons with disability in various aspects of entitlements and functioning. This ‘not so obvious’ assertion is then examined with reference to the secondary data available from the four states. In doing so the first problem one faces concerns the nature of the data. Much of the public domain data is gender blind and even more so disability blind. Nevertheless, the available data does show an accentuated gender divide in the disabled population whether we look at literacy, schooling, access to work or employment. Gender gap in literacy among PWDs is stronger than in the overall population, so is the gap in schooling, access to skills and avenues of self-employment through loans. This aggravation cuts across state boundaries. This is seen right from the stage of giving disability certificates, access to literacy or education, acquisition of skills, chance to convert the skill into income – whether through wage employment or self employment and so on. Even in non – economic issue like marriage, stability of marriage or violence in domestic as well as public sphere, gender and disability combine adversely.
Within gender, widowhood represents another disadvantage. Similarly within disability mental disability represents additional disadvantage. Analysis of primary data indicates that widows and WWDs in Mental Retardation (MR) category are perhaps the most vulnerable among the WWDs. This has important implications on the design of welfare programmes for WWDs. Disability Pension Scheme should perhaps aim to cover this group on a hundred percent basis on priority. Analysis of the primary data also reveals areas where it is imperative that the 2001 census data is cross tabulated to further corroborate or contradict some of the trends seen for the WWDs. Markedly lower longevity among the MR category is one case in point in this regard.
The patterns and the process by which disadvantages multiply rather than merely add, is analyzed further through the primary level data and the focused group discussions.
It is important to analyze the pattern of allocation of government funds in the field of disability. Budget analysis is a nascent area of analysis. But it has been undertaken in this study to make a beginning. As the allocation figures for disability are not available by gender, the analysis is done for the sector as a whole. Even if the analysis is preliminary, it provides important insights in terms of the gap between the budget estimates and the actual expenditure as well as the per capita allocation figures. If consistently done over a longer cross sectional and temporal data base, budget analysis can emerge as an important advocacy as well as a monitoring tool.
The insights obtained through the analysis above, themselves indicate some of the solutions. While programme interventions in the field of disability have made considerable headway in the past few years, they do lack the structure to monitor the lot of WWDs in a systematic manner. Besides the gender-neutral aspects of programme implementation, there is a serious need to address the problem of sexual vulnerability of WWDs in the younger age group. This is one aspect of the problem that the WWDs face and which needs urgent resolution.
The macro data on disability shows certain consistent trends. It reveals regions that make a higher contribution to the disabled population compared to their share of national population. It shows that the sex ratios among the disabled are highly masculine, and most so among the orthopedically disabled persons. Urban sex ratios among the disabled too, are more masculine than the rural ones.
District level maps show a clear cluster of few Districts in Chhattisgarh and Orissa, with high incidence of disability. The pattern of high incidence remains as such whether we map it by gender or by categories of disability. This is intriguing and needs a closer analysis. The low incidence clusters are spread across all states. But this may partly be attributed to quality of enumeration as well. An interesting approach for these Districts will be to take up a welfare scheme like pensions to saturation level. This will either throw up the unrecorded cases or will actually provide full coverage to the WWDs, both being desirable programme outcomes.
We have looked at the macro population data as it is. We also looked at the data related to other parameters e.g. literacy and work-force population. Before exploring these we first explore the question of what converts a impairment into a disability, for, what we have analysed so far is essentially impairment. By itself it may not translate into disability. It is the social organization that mediates such translation and dictates whether and to what extent, persons with impairment get their entitlements. The double disadvantage faced by the WWDs is clearly borne out through the secondary data.
Analysis of the primary data provides useful insights about the socio demographic parameters of WWDs. The age profile of the respondents brings the issue of longevity, particularly among the MR disabilities. This has important implications on the policy for social safety net particularly since the MR also happens to be the most deprived group among the WWDs in terms of various entitlements.
Analysis of the marital status brings out various nuances. First is the harsh reality of the low likelihood of marriage. This is particularly strong among the MR. Second is the hold of the norms of hypergamy. Third is the emergence of widows as the more vulnerable among the married WWDs.
Literacy and educational level do present the rather disturbing picture of entitlement failure. Yet, schooling does provide employment hope to the Girl-child with Disability and must be an important component of any strategy to improve their lot.
The story of entitlement failure continues as we move up the ‘value chain’ chain; the disability certificates, access to skills, the wage/self employment opportunity thereof, aids and appliances, health check up, the security aspects and the decision making. Lack of awareness owing to lack of information appears to be the first and the major bottleneck. Beyond this too it is an uphill task for the WWDs to get their entitlements.
The community environment is not conducive to a better self-esteem and productive engagement with the work place. The family too leaves a lot to be desired. Starting with the stigma and the hidden and not so hidden prejudices, the WWDs have to face the spectre of violence and abuse. This is the most unacceptable part of the entitlement failure and will need an urgent resolution. The recent protective legislation against domestic violence towards women could provide a right beginning in this regard.
The total allocation of the disability sector serves a small percentage of the disability population. The study indicates the ratio towards allocation per disabled persons is highest in Chattisgarh (Rs. 412.93 for the year 2005-06) and lowest in West Bengal (Rs. 74.60 for the year 2004-05).
As no gender disaggregated data on resource allocation is available, the prevailing gender discrimination against WWDs will mean less resources flowing for the women. In the absence of any women specific schemes for the WWDs or any reservation for the WWD in women specific schemes, their access to resource has to improve much more. For this, there should be specific allocation for WWDs in and every programmes/ schemes for the disabled. Which should be monitored through Gender budgeting in the disability sector. Specific allocation should be done for the skill and capacity building for the WWDs. Reproductive health and violence issues should have concrete allocation for the WWDs. Training of the care-givers should be taken up with adequate budgetary provision. There should be some specific programme for WWDs with severe disability and MR category. Awareness programmes should have more allocation and overall there should be improved expenditure. Setting up of an independent and separate department for the Disabled should be the priority.
Conclusion and Recommendations:
A recapitulation: The analysis presented in the foregoing chapters does outline the way forward, at least partially. While making recommendations for the policy or programme implementation, it is useful to recapitulate the relevant findings.
Data disagregation by gender: To begin with, there is a clear need to make the public domain data sensitive to the gender and disability dimension. Much of the data available are, unfortunately gender blind or disability blind or both. This is so even where some of the programmes have been taken up pro-actively by the administration e.g. distribution of disability certificates, disbursement of pension etc. Regular and routine disaggregation of the data by disability and within it gender, and vice versa, emerges as the first need if programmes for welfare or empowerment of WWDs are to be meaningfully implemented.
Use of a user-friendly mapping package: Most of our social realities have a spatial or regional context. Incidence of disability and different discriminations associated with these are no exceptions and do exhibit spatial patterns. Mapping these is important, as some of the examples in Chapter II have shown. The userfriendly mapping package used in this report readily shows areas of high and low incidence. It will be worthwhile using this package for a pan- India analysis of different dimensions of disability.
Accentuated entitlement failure: Analysis of secondary as well as primary data brings out the ‘not so obvious’ conclusion that the twin disadvantages of gender and disability aggravate each other resulting in entitlement failure. The gender gap among the disabled for various entitlements turns out to be higher than that found in the general population. This is surprisingly so even for more elementary entitlements like access to pensions, aids and appliances etc. involving simple organization and direct resource transfer. The gaps aggravate further as we go up the value chain of different entitlements. It seems plausible that among the PWDs, men access the advantages of any new opportunity first and women follow the trail.
Even in the case of simple entitlements like the pensions, training, enrollment, getting aids and appliances, an invisible barrier of 30 to 35% seems to operate. Such barrier needs to be consciously overcome. This will either improve the coverage among WWDs or confirm low incidence of given disability among women e.g. locomotor disability. National guidelines in this regard may need some change and the mandatory coverage for WWDs needs to be increased to ensure greater access to resources e.g. NHFDC loans.
Low participation of WWDs in Self Help Groups (SHG) activity is surprising and points to the need for more sensitive approach of SHG members towards WWDs. Formation of mixed SHG groups of women, exclusive SHGs of PWDs including members of both sexes and exclusive SHG of WWDs may need more encouragement and documentation. As of now it is not clear as to which arrangement will work better in a given context.
Saturation coverage for the more vulnerable: The primary data clearly shows that MR among the WWDs and the widows, are the more vulnerable but less numerous groups. Such groups should be covered under welfare schemes on a priority basis and on a 100% coverage basis. The longevity problem among the MR category stands out in this context, and this group needs saturation coverage on a priority basis. Another group that needs attention in this regard is the mother- daughter dyad which may need support through a pension oriented scheme. Given the size of resources put in the overall welfare schemes, this should not pose a problem. However, care has to be taken to keep out the ‘free riders’ from enjoying the benefit of such coverage through fraudulent certification.
Bringing down barriers: Sensitization, awareness, access and structures: While schemes involving direct transfers are easy to administer, those involving organizations, particularly mainstream organization, present a number of difficulties. Insensitivity on the part of service providers, design barriers due to structures that are disability indifferent, lack of information among WWDs about their entitlements and the procedure to access these are some of the difficulties emerging from the study. Overcoming these require allocation of resources. Budgetary analysis of the disability sector becomes important in this context. While a beginning has been made in this study, this has to be followed more in depth. The first and foremost action point however, is that the gap between BE and AE should be minimized. This may require alertness on the part of government as well as the civil society.
Economic empowerment of the WWDs: The stark reality of marriage as an institution of limited significance for the WWDs, makes it necessary that they are economically empowered and have access to support structures should the family or the sibling support fail or become unavailable. Anecdotal evidence has it that low yet steady income is more useful for the PWDs rather than highly visible or high paid but uncertain jobs.
Safe environment at home and at the workplace: For WWDs and additional issue of safety of the work place and of the passage to the work –place becomes important. As the analysis has shown, WWDs face the spectre of violence and sexual harassment at the work – place as well as within the households too (Annexure II (FGDs & III (Narratives for details) . This is an area of stronger concern. No entitlement failure can justify violence or sexual harassment particularly of an individual who has less where withal to defend herself. Experience narrated by the respondents also chimes in with other similar studies. No civil society can claim to be a developed one when it cannot guarantee dignity to its vulnerable population. WWDs represent one such segment of vulnerable population and how we treat them is probably a barometer of our social progress.