Working with people with disability in India is a tough job. To being with, data, the foundation stone for understanding patterns and trends just do not exist- existing data generated by official data sources like census of India or the National Sample Survey are inconsistent in their definitions of disability and therefore the numbers they generate also vary.

What is however, more disturbing is that the disability discourses often fail to engage with people with disabilities themselves. This crucial aspect of providing these people opportunities to express themselves seems to have been continually excluded. What we have, therefore, is often the opinions of the ‘significant others’ or the most vocal that substitutes or ‘represents’ the views of the people with disability. People with disabilities are further silenced as it is assumed that in addition to whatever disability they have they would also be unable to express themselves. In case of those with hearing and speech impairment, the problems are exacerbated (though one could possibly argue that it is the inability of researchers rather than the respondent to use alternative modes of communication). However, in contexts where people with disabilities are routinely marginalized and excluded, such debates never arise.

There are also some logistical issues, among poor households in India, for example, private’ space for working with people with disability has both physical and socio-cultural issues. Often physical space is just not there and people with or without disability have no space they could call as their own- all space was ‘collective’ . Given this, any attempt to work is surely to be infringed by so many ‘others’ –family members, neighbours, local vendors. These are inescapable and are bets treated as a bonues- it reflects the familial and communal context of individual lives.

However, the need for developmental work that captures the voices of the people can hardly be overemphasized. It is crucial to effectively access and bring to fore the narratives of young people with disabilities- their perspectives and experiences. And these need to go beyond anecdotes- these need to be captured following true methodological protocols to ensure that there they meet the academic rigors that upholds the trustworthiness of these accounts while retaining all its richness and details.

This can only happen if there is more emphasis on qualitative studies. Unfortunately, the field of disability research in countries in India has been largely dominated by quantitative work with very little space for the voice of the people with disabilities. However, as is true for all kinds of public policy, interventions that impact lives of the people with disabilities should be informed by their narratives of experiences. Only then are they reflective of the needs of the people they are designed for and only then are they empowering.

What can be done to capture the voice of people with disability in policy and interventions that impact them?

Youth persons with Disabilities (YWD) are often the most neglected sections of society. While the disability discourse has generated some material on the children and on the adults with disability and the literature on gender has highlighted the cross-cutting impact of disability on women, there is really Not much of a body of literature on the YWD.

 A UNICEF (1999: 1) report stated that, “Adolescents and youth with disabilities are among the neediest and most overlooked of all the world’s children”. Consistently across the globe, especially in developing countries, mainstream policies and programmes working with young people seem to overlook the needs of those with disabilities, while efforts aimed at people with disabilities tend to focus either on children or adults. Thus the unique social, psychological and physiological concerns of young people with disabilities tend to go unaddressed and this situation is reflected in the more recent In working with young persons with disabilities it is important to and their significant others, this research will explore the local meanings that persons with disabilities and others around them attach to disability, poverty and education. It will focus on the role that education and other enabling factors play in helping young people with disabilities make transitions into adulthood and in some instances move out of poverty.

Given that WHO estimates suggest that there are between 120-150 million children, adolescents and youth with disabilities and UNICEF reports that “with half of the world’s population under 15 years old, the number of adolescents and youth with disabilities can be expected to rise markedly,” we are actually neglecting a significant section and undermining their capabilities.

The participation of this group remains hugely restricted- in education, in employment and they encounter social isolation and prejudice. This exclusion often has societal support, their marginalization is formally sanctioned. Very little is known about the lived experiences of these people- that area remains blurred. This is more so for the YWD in the rural areas as absence of schools/ facilities for special education mean that as children, most are denied access to education. This further impedes their access to decent livelihood entrenching them in poverty and deprivation.

Needless to say, more qualitative studies need to be undertaken to capture the experiences of the youth and find ways to mainstream the same. The existing studies point how marginalization of the YWD results in a situation where even when the YWD contribute to family kitty, such contributions are not recognized or acknowledged, partly because they are not given work directly but are passed on work by relatives and family members. Neither is their contribution towards undertaking household chores recognized, even though their participation means that the other members of the family are freed on the responsibility and can take up other work.

What is the way ahead? Documenting and recording experiences and a focus on the strengths and capabilities of the YWD, an engagement with the process of identifying and removing barriers and constraints to participation- these are the first steps. Really these are not unachievable – time consuming yes, but impossible, no.

What can be done to tap the potential of the YWD in India?

There are so many models of disability that one often feels that theories and the semantic discussions they entail obfuscate the realities. This is especially so in a developing world context like that of India where poverty entangles with disability to create a situation of stigma, discrimination, marginalization and exclusion.

The context also blurs the difference between models and urgently calls for action on ground. And yet models are important- not because of the academic importance of proving the theoretical backdrop but because they determine and greatly influence the action of ground.

It is important, for example, to sort out whether we, as a society, subscribe to an individual model or a social model of disability, because then it is possible to streamline our polices and actions based on that. The difference between the two models is very well articulated by Mike Oliver, the famous British academician and disability advocate, as, “ The individual model is underpinned by the personal tragedy theory of disability- which suggests that disability is some terrible chance event which occurs at random to unfortunate individuals. It is not individual limitations, of whatever kind, which are the cause of the problem but society’s failure to provide appropriate services and adequately ensure the needs of disabled people are fully taken into account in its social organization. Further, the consequences of this failure does not simply and randomly fall on individuals but systematically upon disabled people as a group who experience this failure as discrimination institutionalized throughout society”. http://www.leeds.ac.uk/disability-studies/archiveuk/Oliver/in%20soc%20dis.pdf

Now, in the context of a developing country like India the social model often looks a little stretched as many forms of disability are preventable and medical interventions are required for the same. However, the point is to realize that while medical intervention can be a significant component, it is important to bear in mind that disability is not a medical condition. Take the example of a child who is blind and lives in a town. The chances of such a child attending a school are poor. However, this not just because of ‘his problem’- it is because the school is ill equipped to teach a blind child – it does not have textbooks in Braille and it does not have trained teachers for such children. So, now, is the ‘problem’ with the child or with the school, which actually represents the society? I have used the example of a town and not a village because often village societies are more open in terms of having diverse children in the classroom- they might still not have the necessary equipment or teachers, but the child might still be allowed in the class leading to slightly higher levels of inclusion. The purpose of the example is to illustrate the importance of the social setting and attitude to understand disability. It is to reinforce how deeply disability is entrenched in the way the society is arranged and take action that can address these social aspects. Without this, interventions would be largely diagnostic ans superficial.

Enumerating the Persons with Disabilities (PWD) has been a challenging issue for India. At the same time, population enumeration is one of the key requirements for understanding and planning of the PWDs, one of the most marginalized sections of the society who are deprived of their rights often due to lack of awareness about their condition.

Census, the most comprehensive of population enumeration processes in India, is in the forefront of the debate on the way to authentically include the PWD. As per the census 2001, the population of persons with disability has been recorded as only 2.13% of the total population. This is much lesser than what is claimed to be 7-8% by a number of disability organizations and disability rights groups in the country. In addition, exclusion of different types of disabilities has also been an issue. The Census in 2001 had only listed 5 types of disability (Visual, Hearing, Speech, Movement and Mental Retardation). Although, there are numerous types of disabilities and all of which could not be listed, even the most prevalent diseases like, Muscular Dystrophy, Autism, Cerebral palsy, age related disabilities etc were excluded. This was mainly due to the design of the census questionnaire and lack of training and sensitization of the enumerators. The problems were compounded as the social stigma associated with disability and the lack of awareness led to under-reporting.

To add to the confusion, the National Sample Survey (NSS) enumeration of disability has also generated a different figure. The NSS definitions of hearing, speech and locomotor impairments are more inclusive, and produce larger esti¬mates than does the census. But for visual impairments, the census includes people using spectacles or contact lenses, whereas the NSS ignores them. For mental impair¬ment, the definitions used by the two agen¬cies are very different. The census and NSS have radically differ¬ent definitions of four of the five major kinds of impairment, which explains some, but not all, of the differences in their esti¬mates. Taking all disabilities together, the stricter definitions provide a lower estimate of people with disabilities of 11.8 million; taking the wider definitions generates an estimate of 26.5 million. (http://recoup.educ.cam.ac.uk/publications/JefferySingal20081.pdf)

The 2011 Census is expected to be more systematic and inclusive as Disability organizations like the National Centre for Promotion of Employment for Disabled People (NCPEDP) that have been roped in the process of planning. The most significant changes include the expansion of the categories of disabilities from five to eight. For the first time people with mental illness and multiple disabilities have been brought in. Those with disabilities, besides the seven listed, can be accounted for under the eighth category titled “other disabilities.” http://www.hindu.com/2011/01/10/stories/2011011051211100.htm.

The significance of enumeration in the census process cannot be undermined as it is the most critical foundation for policy formulation and resource allocation for the PWDs. Here is hoping that Census 2011 does a better job of capturing the numbers. At the same time, let us also hope that we also move beyond the numbers and capture the experiences of the PWDs and find ways to include those in the process of policy making.

Will 2011 census be able to enumerate the disability figure adequately?

Where there are vast disagreements about numbers, there is an agreement that India is home to a large section of persons with disabilities (PWD). Also, there is a general consensus that most of the PWDs live a sub-optimal life, either over protected or abandoned by their families. Despite several years of legislations, policies and action, a large number of PWDs continue to be deprived of the basic entitlements. This is to a great extent due to a lack of awareness of their entitlements.

In addition, for those PWD who are aware of services, a substantial share of PWD face difficulties in accessing the benefits. The first hurdle is to get the disability certification, which in itself is a bureaucratic and centralized process though there have been recent efforts to use schools and Panchayati Raj Institutions (PRI) to decentralize the process and make it more accessible. However, at present the persisting problems remain: the institutions from which PWD receive services and benefits are at district level and the offices are often at a distance from the villages, physical access to get to the offices to claim benefits is a challenge. The caregivers and the PWDs also encounter difficulties in negotiating with procedures and dealing with often indifferent and insensitive officials. Arranging the documents for initiating the certification process is also an issue as the poor and the uneducated are often not familiar with the paperwork required. Often the caregivers spend many days and are forced to forgo daily wages, just to get the certificate.

There are issues at the institutional levels also. According to a World Bank report, implementation is made more challenging in part due to a nodal Ministry with limited resources and convening power, and weakly functioning coordinating institutions. Implementation is also constrained by a complex institutional framework for operation of the disability sector in India. The nodal agency for disability is the Ministry of Social Justice and Empowerment (MSJE)

The report also questions the relevance of MSJE as lead agency. Giving the examples of special education and early identification of disability, it says that the Ministry of Human Resource Development (MHRD) and Ministry of Health together with Women and Child Development Ministry respectively are the appropriate lead agencies. The report also points towards lack of inter-sectoral institutional coordinating mechanisms.

Given the problems both at the demand and at the supply side, the PWDs are often deprived of their rightful entitlements. Can civil society play a more significant role in bridging the gap?

Despite years of legislations, policies and action, Persons With Disabilities (PWD) comprise one of the most deprived sections of the Indian population. While there are huge disagreements about definitions and numbers, everybody agrees that very few PWDs in India, get the opportunity to engage in remunerative work that are at part with their capabilities. Large majority of PWDs lead sub-optimal lives, either over protected by their families or abandoned by them and forced to live a life of destitution. In either case, their ability to engage in useful and meaningful work is curtailed.

Among the disabled some are more likely to be without work than others. An Action Aid study on Disability and Social Exclusion in Rural India supported by the government that covered rural areas across two states of Rajasthan and Andhra Pradesh demonstrates that unemployment rates vary by type of disability, a pattern that has been called a hierarchy of disadvantage. Persons with mental retardation are the most disadvantaged groups-   in the survey in Rajasthan 94 percent of those do no earn a living. In the other end of the spectrum are those with speech and hearing disabilities who are comparatively better off with an unemployment rate of 54 percent. This finding is consistent with NSSO (2003) data that show that among the disabled persosn with speech and hearing , locomotor or visual impairments have highest employment while the people with mental retardation are the most disadvantaged. However, it must be stated that even the minority of disabled villagers who find work do so irregularly and for limited periods.. The Action Aid survey revealed that the PWD are engaged only during peak seasons when other workers are unavailable and are paid less than the ‘able-bodied’ workers. In Andhra Pradesh for example, wage employment averaged only seven to 10 days in a month and never exceeded seven months in a year, resulting in uncertain incomes ad seasonal shortfalls.

Further, majority of the PWD in the rural areas are employed as wage labourers in agriculture which is not only one of the lowest return occupations in India but also inappropriate for the PWD due to the physical nature of the work. Low levels of education acts as a constraint to their engagement into skill based occupation and limits their option to physical work in agricultural fields.  While in the rural Indian context, education does not translate into improved livelihood options, without functional literacy and basic numerical knowledge, engagement in other options gets barred.

Livelihood is an area where the PWDs face tremendous discrimination not just for their physical state but for the way the society is organized. Barriers to the participation of PWD in work often stem from social attitudes that assume that PWDs are incapacitated. While Stephen Hawking is a glorious and famous example, there are many other PWDs who have excelled professionally. However, the Indian approach to the issue continues to be paternalistic with more emphasis on welfare and doles that creating opportunities and environment for participation.

In dealing with livelihood issues for the PWDs, it is also important to take a non-tragic view of disability and look beyond the problem to uncover the possibilities. Yes, PWDs have problems- but they also have strengths, they also possess some assets – like all individuals do. Rather than harping on the problems, it might be a better idea to identify and build on the strengths. This has to be complemented by action to make institutions responsible for creating employment opportunities for the PWDs more responsive and effective.

Unless the issue of rural livelihood of the PWD is addressed- with radical change in approach from philanthropy to empowerment - an important section of the population would live a sub optimal life without getting the chance to explore their potential. Is it acceptable to us as a society?

• Concept of Karma features prominently in literature / discussions about disability, with disability perceived either as punishment for misdeeds in the past lives of the PWD, or the wrongdoings of their parents
• Presence of the PWD is considered inauspicious during such occasions as wedding
• There is low acceptance of children with disabilities attending regular schools
• Persons with disability face significant challenges in getting married and having families. In PWD/non-PWD marriage, it is expected dowry would always need to be adjusted.
• Mythologies and Bollywood films often show PWDs in various forms of negative roles – either wicked and cruel or dependent and pitiable.
• There is low acceptance of children with disabilities attending regular schools.

(Source: World Bank Report: People with Disabilities in India: From Commitments to Outcome, 2007)

People with disabilities experience found substantial social marginalization in the Indian society. Indeed, attitudes of society, families, caregivers and PWD themselves often contribute to converting impairments into disabilities. The different sets of attitudes interact and the negative views about PWD in the broader community are likely to be internalized in many cases by PWDs themselves and their household members. In this regard, community action has actually failed the PWDs.

The social status of the PWD’s family often has an impact on their potential acceptance in society. Changing societal attitudes to people with disabilities, even among PWD themselves, presents many challenges. However, a basic starting point is facts. A good example in case is the leprosy campaign. Despite availability of multi drug therapy that made leprosy curable, the biggest barrier to eliminating the disease is ignorance and stigma. To address this, the BBC World Service Trust developed a campaign in India, in partnership with Doordarshan TV and All-India Radio emphasizing on curability, availability of free medicines and messages supporting inclusion. Independent impact assessment of the program demonstrated positive impact of the program.

It therefore makes sense to undertake, among other things, awareness campaigns emphasizing that stigma attached to disability is driven by ignorance and that disability is not a pre-ordained event. Similarly, putting the experience and success stories of persons with disabilities into the public arena needs to be done with the idea to stress of possibilities rather than disabilities. .

Building on this, steps need to be taken to address the medical and social causes and consequences of impairment and disabilities. Finally, unless attitudes change, little change is possible in improving the quality of life of the PWDs.

Any understanding of disability remains incomplete until the gender dimension of the issue is well understood. Given that disability receives little attention from mainstream development agenda, the gender aspects of the issues are often ignore. However, awareness about how disability impacts the lives of men and women differently, can help design programs that are better tuned to the realities of the people that are often markedly different.

For example, National Sample Survey (NSS) 58^th round illustrate that accidents and injuries have some role in around 18 percent of all disabilities. There are, however, major gender differences in the source of such injuries. For males, over 35 percent of these injuries are at the place of work, while for women, the overwhelming proportion – 60 percent - are at home.

There is also a marked difference in intra-household attitudes and community views vis a vis men and women, especially with regard to violence against women with disabilities. This is a subject on which little quantitative research has been done to date in India. However, a 2005 study by an NGO Swabhiman 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. The findings 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. (Cited in: India: From Commitments to Outcomes, World Bank, 2007)

Similarly, analyzing marriage and widowhood rates, NSS data indicate that women with disabilities have much higher rates of widowhood than women without disabilities in both urban and rural areas – in both cases around four times the non-Women With Disabilities (WWD) rate. Conversely, the proportion of WWD who are currently married is much lower than non-disabled women. The explanation for such differential rates can most likely be found in the common practice of marrying of women with disabilities to men much older than themselves – men who are unable to find more “marketable” brides. (Source: India: from Commitments to Outcomes, World Bank, 2007).

These factors demonstrate that with the same kind and extent of disabilities, men and women often have different life situations that need to be understood and reflected in the programs designed and implemented. In addition, there are other intersectionalities like economic class, education levels etc, that need to be factored in to make the gender aspect of disability clearly spelt out and addressed.

Do the existing policies and programs adequately capture the gender dimension of disability?

• Around 10 per cent of the world’s population, or 650 million people, live with a disability. They are the world’s largest minority. Eighty per cent of persons with disabilities live in developing countries, according to the UN Development Program (UNDP).
• Women with disabilities are recognized to be multiply disadvantaged, experiencing exclusion on account of their gender and their disability.
• Women and girls with disabilities are particularly vulnerable to abuse. A small 2004 survey in Orissa, India, found that virtually all of the women and girls with disabilities were beaten at home, 25 per cent of women with intellectual disabilities had been raped and 6 per cent of women with disabilities had been forcibly sterilized.

Source: Fact sheet on Persons with Disabilities, United Nations, Enable

Women with disabilities are one of the most marginalized sections in Indian society. They are often deprived of the most basic rights and opportunities in life- like education, health, employment, etc. While the women with disabilities face multiple forms of discrimination: as women experiencing gender discrimination and as a person with disability experiencing social prejudices, they have been largely neglected in research, state policies, the disability and women’s movements, and rehabilitation programs. At the household levels, they are often left out of the decision-making processes. This is especially true in India where the traditional role of wife and mother is considered to be primary and women with disabilities who might have problems fulfilling these roles are viewed with disdain.

As a consequence of these factors women with disabilities often have low self esteem, low levels of literacy and experience discrimination within their own families. Literacy rates are lower among women with disabilities and so is the work participation rate. Disabled girls and women living in rural areas are more deprived than those in urban areas as there are few support services, and gender-biased cultural practices are more common. They are more likely to be left out of family interactions and community activities.

The disability movement in India has also been largely male dominated. However, in recent times there is better realization of the special needs of the women with disabilities and there is a surge in the numbers of organization that work with such women. There is also an emphasis on developing leadership from within the group- through a process of creating spaces for women with disabilities to articulate, advocate and realize their rights. Women with disabilities are now being increasingly projected as the new face of the disability movement. (http://healthexchangenews.com/)

What are the best practices to empower women with disabilities?

‘Human rights set out an internationally accepted moral code by which the intrinsic humanity of every individual is recognized and protected. Human rights are the fundamental, universal and indivisible principles by which every human being can claim justice and equality.’

What disadvantages the Persons With Disabilities (PWD) the most is the discrimination built upon a set of negative social attitudes and cultural assumptions and inappropriate environments that influence policies, laws, structures and services resulting in their economic marginalization and social exclusion.

The status of disabled persons has traditionally been viewed from the prism of paternalistic ‘social welfare’ –which looks upon them as those who are in need of special protection by the state and society in general. The consequence of the same is that individuals with disabilities, their care givers or groups representing them are seldom given an adequate opportunity to participate in the framing of policies for their benefit. (http://www.supremecourtofindia.nic.in/speeches) This failure to see persons with disabilities as rights-bearing citizens leads to a lack of inclusion and effective consultation in policy-making results in policies that fail to address the gamut of problems faced by the PWD and their caregivers.

Consequently, access to full and equal participation has been denied to PWD, creating conditions that result in them being among the poorest of the poor. This has severe implication for the PWD as poverty not only aggravate their social exclusion but also makes people much more vulnerable to contracting a whole range of disabling impairments. Poverty and disability are intertwined as malnutrition, poor sanitation, lack of immunization, inadequate health care, few safety provisions exacerbate impairment.

In this context, promotion of a Rights Based Approach (RBA) to disability is imperative to protect the rights of the PWDs and engage them in the process of framing policies that impact their lives and situations. Article 1 of the Convention on the Rights of Persons with Disabilities by the member countries of the United Nations proclaims that “The purpose of the Convention is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity.”

There is considerable variation with respect to how a human rights approach has evolved. Nonetheless, there is one defining characteristic: all such interventions based on this approach have been controlled by disabled people themselves. Human rights provide a means of empowering all people to make decisions about their own lives rather than being the passive objects of choices made on their behalf’ (DFID, 2000a, p10). For disabled people this is of particular significance since traditionally they have been seen as a group which needs to be looked after by others, not one that can act on their own behalf. (http://hpod.pmhclients.com/pdf/human-rights-approach.pdf)

What is our general approach as a society to the Persons with Disabilities?