Deserving dignity

A differently abled boy waiting for medical check-up at the Revenue Divisional Office in Tirupur in Tamil Nadu.-M. BALAJI

Justice for the disabled demands fulfilment of their rights to inclusive education, employment and social participation.

In the kingdom of ends everything has either a price or a dignity. What has a price can be replaced by something else as its equivalent; what on the other hand is raised above all price and therefore admits of no equivalent has a dignity. Humanity insofar as it is capable of morality, is that which alone has dignity.

Immanuel Kant, Groundwork of the Metaphysics of Morals.

True equality for the disabled means more than access to buildings and methods of transportation. It mandates a change in attitude in the larger social fabric of which we are all a part to ensure that they are no longer viewed as problems, but as holders of rights that deserve to be met with the same urgency we afford to our own.

Mary Robinson, Foreword, The Human Rights of Persons with Intellectual Disabilities.

DISABILITY strikes anyone age, sex, community and caste are no bar. A software engineer has a brain injury, a labourer loses his arm, a child is crippled by cancer. Some people born with disability or who are affected as children learn early the hard lessons of social exclusion and family rejection. But disability or being differently abled as the more politically correct language of inclusivity puts it does not mean that a person becomes less human. The desire to contribute economically, socially and emotionally to society is no less. In fact, the experience of disability can make a person strive all the more to be recognised as a valuable human being, able to give rather than always having to receive.

It is encouraging to note that the number of Indians suffering disability as a consequence of leprosy is rapidly falling and polio is comparatively on the decline. Yet other illnesses and conditions, many linked with poverty such as preventable childhood blindness, hearing impediment, cerebral palsy and lathyrism, a motor neurone disease caused by toxins in cheap lentils, continue to reinforce the link between disability and poverty. Poverty itself increases the likelihood of childhood disability through poor nutrition and difficulty in having access to neo-natal medical care. People who are both disabled and poor suffer a double burden even before caste, gender and community factors are added to the mix.

Historically, the link between poverty and disability has been quite crucial to the place a disabled person could hold in society. The disabled are profoundly vulnerable to poverty. Loss of livelihood often follows disability and those born into it often have little option but to beg for food and money. The Hindu law in the Mitakshara and Dayabhagha codes disinherited those who were lame, blind, insane or afflicted with leprosy. Although Manu and other dharmasastric authorities directed that the family must maintain those denied inheritance on the basis of disability, the disabled remained excluded from the option of inherited wealth and security unless their defect could be removed by medical intervention or through ritual practice. Besides economic disenfranchisement, a disabled member of the family was also seen as a risk to future prosperity and marriage for other family members.

Hence, the disallowance of inheritance was not simply a legal matter, but a reflection of the karmic logic and social attitude that those who were infirm and disabled were less ritually pure. It is not that traditional Indian society neglected the disabled completely. Many steps were taken to care for the disabled, particularly the disabled poor, such as giving them alms and establishing choultries and langarkhanas that provided regular meals and, at times, shelter for those without other means of support. Such systems of charitable support, much like contemporary charity models of disability care, however, ensured that the disabled remained a category of the population outside the mainstream structures of society.

Moreover, providing food and shelter had more to do with obtaining spiritual favours for the giver than with improving the economic and social conditions of the disabled poor.

During the British colonial period the poor with disabilities were more vulnerable than any other group to colonial interventions. Those with financial and family support tended to remain hidden from the colonial purview. Those without such supports were more likely to seek help from government-run outpatient clinics such as the British Civil Hospital and Medical Dispensaries established in 1842. Usually as a last resort and when illness or scarcity made any livelihood, even begging, impossible, those disabled by blindness, deformity, illness or mental incapacity would seek food, treatment and shelter from specialised government or mission-run inpatient institutions, including leprosy and mental hospitals. Within institutional walls, poverty radically altered the identity of the patient. Class determined whether someone with disability was a patient with rights and autonomy or a prisoner who could not leave without permission. Colonial legislation reflected this distinction.

The 1898 Lepers Act, for example, targeted vagrant and poor leprosy sufferers for confinement while leaving those in employment to continue to live within the community. The historical record also attests to the critical importance of socio-economic status in enabling disabled people to live ordinary and constructive lives.

Poverty did not automatically follow upon affliction and disability, and where a reasonable socio-economic status could be maintained, the disabled person was able to live a relatively normal life. Records reporting on 19th and early 20th century leprosy cases throughout India describe the leprosy-afflicted persons working as lawyers, teachers, merchants, goldsmiths and shepherds and even selling food and drink despite clear evidence of the disease and its attendant deformities. Some, who continued to work and maintain middle class status, were able to remain within the family home and marry. Does this historical experience not teach important lessons?

Governments and policymakers, businesses and industries ought to realise that supporting the social and economic status of a disabled person through recognition and employment is as important to that persons life as providing mobility and other structural support such as hearing aids, wheelchairs, transport and computers.

In February 2006, the Central government adopted the National Policy on Disability, which recognises the value of people with disabilities as a national resource and undertakes to change the social and physical environment to support equal rights and full participation in Indian society for the disabled. However, to be recognised as a person and allowed to contribute, the disabled person still has to endure many forms of overt and subtle discriminatory exclusion from society. The weight of history is against official acknowledgement of the disabled and Indian society has been extremely slow in breaking away from it. British colonial governments took more than a century to begin formally counting the disabled in India.

The first decennial all-India Census of 1871, described by the anthropologist Barney Cohn as an act of colonial surveillance, included the counting of the Infirm defined as insane, idiot, deaf and dumb, blind and leper members of the population. From 1931 to 1981 the Indian Census excluded disability statistics in any form.

This tendency to forget the marginalised and disabled can be found in many modern nation-states. In 1970, fewer than 20 countries asked census questions to assess the nature and needs of their disabled populations. Public and international pressure mounted throughout the International Year of Disabled Persons in 1981 propelled nearly 60 countries, including India, to formulate some questions about disability in their national census. In India, however, 1981 marked only a brief appearance by disabled people in the Census statistics. Disability figures were subsequently left out of Census data until 2001. Instead, partial figures were gathered in the narrower context of sample surveying of socio-economic data, including poverty, slum and consumption figures through the 1981, 1991 and 2002 National Sample Surveys (NSS). Within the NSS, data on mental disability were not gathered until the third round in 2002. Census data collection on disability was only reinstated in 2001 after non-governmental organisations and government departments, including the Ministry of Social Justice and Empowerment, vigorously campaigned for the right of the disabled to be counted as full members of Indias citizenry.

From the viewpoint of social policy, the crucial question now is this: How many of the disabled remain forgotten and how many are truly included in the mainstream of Indian life? Are they seen as people with the same rights and aspirations as others or only as charity cases? As India continues to grow economically and reap the benefits of a globalised economy, the neglect of its disabled citizens should be viewed as a matter of social justice and development. By failing to support the disabled in developing their capabilities, India is missing out on a resource base of creativity, talent and drive.

The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995, recognises in principle the value of disabled people and the constructive contribution they can make to the social, economic and cultural power of India. But this can be translated into reality only when there is allocation of sufficient financial and human resources and conscientious and effective delivery of various benefits and programmes. Just as urgently, various social attitudes and religious beliefs that are resistant to positive integration of the disabled into mainstream social life must be confronted and transformed through concerted effort and publicity campaigns in schools, colleges, media and other public fora. It should be noted that the welfare and rights of the disabled is not distinct from but closely linked to gender justice as most personal and professional care for the sick, the elderly and the disabled is given by women.

Socially and economically recognising and rewarding their work turns out to be an essential component in fulfilling the obligations of justice for the disabled themselves. In all these matters it is crucial to encourage the voice of the disabled so that they can contribute to and have a say in what is being done. Persons with disabilities are not simply patients to whom welfare benefits should be dispensed, but are human agents who can actively contribute to their own development and destiny.

Education and employment are the keys to improving the welfare, empowerment and social esteem of the disabled. But to realise these objectives, one needs a critical eye to take notice of the multiple deprivations that can co-exist with disability. The NSS measurement criterion for extent of physical disability includes indicators of self care such as the ability to go to the latrine, taking food, getting dressed, etc.

The sample survey showed that about 13 per cent of those disabled in rural and urban India were so severely affected that they were unable to care for themselves even with aids and appliances in place to support them. Even so about 60 per cent were able to care for themselves without aids or appliances and a further 17 per cent could manage with some support. Between 9 and 10 per cent, however, had no appliances available or were unable to find an appropriate aid to help them lead an independent life.

The figures for self care were slightly higher for those living in urban environments with significantly more of those living in rural areas being unable to have access to the necessary support equipment.

Given these figures, it is only reasonable to expect that at least 60 per cent of the disabled persons would be able to get full access to education. However, the NSS indicates that disabled people have relatively little access to education in both rural and urban areas. The survey showed that in rural India, nearly 60 per cent of those aged five years and above were functionally illiterate, with the proportion reducing to 40 per cent in the urban areas. Overall, not more than 30 per cent had education up to primary school, with less than 1 per cent of the disabled reaching secondary schooling and above.

Could this situation be improved? What are the factors limiting inclusion in education despite its support at legislative and national policy levels and the provision of special services and schools? One common cause is the lack of awareness of entitlements on the part of the disabled, accompanied by practical and administrative negligence in delivering them effectively. Even obtaining a disability certificate or a scholarship is made a cumbersome and long-drawn process.

Disabled beneficiaries who seek to get what is due to them are often at the mercy of local administrators and elites.

Further, despite the various recent initiatives by the government, resources for the education of children with special needs remain very limited. Few children have the mobility opportunities to travel to a suitable school. Even with subsidised transport fares, buses and trains can be inaccessible for a disabled child or can require resources a family cannot afford. Education is still regarded by some as a luxury that is available only to children who do not have work to support the family.

The intervention of government health workers, NGOs and informed well-wishers is essential to bring children and adults with disabilities into contact with the services and opportunities available. They can play an important role in explaining and interpreting the situation and needs of the child to the parents and can act as advocates in obtaining scholarships, medical treatment and disability aids for the child. More importantly, they can help break down social and emotional barriers to the childs integration into family life, the local school and the community.

Disability and the effort to gain resources for the child can contribute to the whole familys sense of empowerment and social acceptance rather than being a source of shame and fear. Technological advancements can no doubt enhance the freedom, learning capacities and independence of the disabled in many ways, but they cannot be a substitute for human warmth and assistance.

If education is a potential tool for empowerment in the armoury of the disabled, economically gainful employment is an actual and effective means to human dignity and social integration. Under the Persons with Disabilities Act, 1995, a total of 3 per cent of positions are reserved for people with blindness, hearing impairment or cerebral palsy. Special employment exchanges have been established throughout India to assist the physically disabled to find work. In addition, funds in poverty alleviation schemes are earmarked to help employ disabled persons, and private sector employers are given incentives to make at least 5 per cent of the disabled part of their workforce. Stories of inclusive employers and the success of their disabled workforces are slowly beginning to emerge.

Yet not many people are actually able to take full advantage of these opportunities. As in the general population, the vast majority of the disabled in the rural area are employed in activities such as agriculture and fishing and those living in the urban area are employed in manufacturing and artisan labour.

On the whole, only 26 per cent of the disabled are in employment, with 74 per cent being either not engaged in or unavailable for work. The experience of government job reservation and the special employment exchanges strongly suggest that physically disabled people are relatively easier to place in mainstream employment than those with mental disability. Mental disability proves one of the greatest challenges for those afflicted and for those who care for them.

One dominant factor contributing to the limitation of employment opportunities for disabled people in India is the lack of both school level and vocational education for disabled people aged 10 years or more. Physical and mental disability is for many the starting point for other disabilities. Lack of education, employment and poverty typically compound the initial affliction. Even those previously employed can experience catastrophic life change through the impact of disability. A marriage can be destroyed, children deserted and families broken up under the strain of disability. But disability does not mean the loss of humanity and the desire for social inclusion. If and when properly applied, economic and political planning can effectively minimise, if not totally eliminate, the impact of disability on human life and happiness. Disabilities are not defects, but another sort of differences in the garden variety of human life.

We appreciate disabled people and accommodate them in our social fabric and circles of friendship simply because they are as valuable and cherishable as anyone else.

Dr. John M. Alexander is the author of Capabilities and Social Justice: The Political Philosophy of Amartya Sen and Martha Nussbaum, Ashgate, 2008. He teaches at Loyola Institute of Business Administration (LIBA), Loyola College, Chennai.

Dr. Jane Buckingham is the author of Leprosy in Colonial South India: Medicine and Confinement, Palgrave, 2002. She teaches at the School of History, University of Canterbury, Christchurch, New Zealand.