Children with Disabilities—The Invisible Child

Is disability about lack of ability due to impairments in the body or the mind of the individual or is it about a society which is oblivious to diverse needs of persons with disability (PWD) and just expects them to ‘fit in’ to the mould of the so-called ‘normal’ people? Or is it about governments and systems which at every step espouse negativity and apathy, hence oppressing and blocking the functionality of PWD? Or is it about a society that has decided to give up on a human resource because it has assumed/formed a stereotype image of PWD as being incapable? These issues will be examined in this section.

For most of the twentieth century in ‘western’ societies, disability has been equated with ‘flawed’ mind and bodies. It spans people who are ‘crippled’, ‘confined’ to wheelchairs, ‘victims’ of conditions such as cerebral palsy, or ‘suffering’ from deafness, blindness, ‘mental illness’ or ‘mental handicap’. The individual’s impairment or ‘abnormality’ necessitates dependence on family, friends and welfare services, with many segregated in specialised institutions. In short, disability amounts to a ‘personal tragedy’ and a social problem or ‘burden’ for the rest of the society (Barnes and Mercer 2003). However from 1960s, this orthodoxy in thinking and practice was challenged by disabled people, particularly, those forced to live in residential institutions, who took a lead in calling for policy changes (Hunt 1966). They directed attention to the impact of social and environment barriers, such as inaccessible buildings and transport, discriminatory attitudes and negative cultural stereotypes, in ‘disabling’ people with impairments (Bowe 1978).

It was largely left to the disabled people to develop their own critique of the conventional approaches to disability. Hunt (1966) in an edited collection challenged the standard preoccupation with the medical and personal ‘suffering’ experienced by individuals with impairment. Hunt argued that ‘the problem of disability lies not only in the impairment of function and its effects on us individually, but also more importantly, in the area of our relationship with ‘normal’ people.’ A sharp dividing line is drawn between the social lives and interests of ‘able bodied’ and disabled people. The latter are ‘set apart from the ordinary’ because they pose a direct ‘challenge’ to commonly held societal values: ‘as unfortunate, useless, different, oppressed and sick’. As Darlington et al. (1981) point out, disabled people are viewed as ‘unfortunate’ because they are unable to enjoy the social and material benefits of contemporary society. These include opportunities for marriage, parenthood and everyday social interaction.

The perception of disabled people as ‘useless’, flows from their lack of engagement in mainstream economic activities. As a consequence of their failure to conform to ‘normality’, whether in appearance or in control over their minds and bodies, they are set apart as ‘different’. Moreover, people’s shocked reactions to obvious ‘deviant’ stimulate their own deepest fears and difficulties, their failure to accept themselves as they really are and other person simply as ‘other’ (Hunt 1966).

The emergence of socio-political approaches to disability reflects disabled people’s claim that they experience significant and entrenched social oppression. This is evidenced by a highly unequal distribution of material resources and uneven power relations and opportunities to participate in everyday life, compared to those available to non-disabled. Disability is viewed as a form of social oppression akin to sexism and racism. Like sexism and racism, disablism expresses itself in exclusionary and oppressive practices at a wide range of levels: interpersonal, institutional, cultural and societal (Barnes and Mercer 2003).

Iris Marion Young (1990) differentiates five main aspects of oppression: exploitation, marginalisation, powerlessness, cultural imperialism and violence. Marginalisation refers to the systematic removal of a social group from the main stream of everyday life. Powerlessness is when people have little control over what to do with their lives. It is verified by sharp divide between those who exercise authority or power (as in case of professionals) and those who simply ‘take orders’ and lack authority or status. Exploitation needs no explanation. Cultural imperialism is when ‘able bodied normalcy’ is embedded in everyday thinking and behaviour as a privileged or desirable state of being. Violence against the disabled people is systematic and wide spread. Irrespective of whether it takes the form of physical or sexual attacks, eugenic policies or verbal ridicule, it is directed at specific individuals because they belong to a particular social category the ‘disabled’.

Children are entitled to protection from violence, exploitation and abuse, including from economic exploitation, sexual exploitation and abuse, sale, trafficking and any similar practices prejudicial to the child’s welfare. Children and young persons with disabilities have been reported as being significantly more likely to be the victims of physical, sexual and psychological abuse than their peers without disabilities. The powerlessness, social isolation and stigma faced by children with disabilities make them highly vulnerable to violence and exploitation in their own homes, as well as in care centres, institutions or on the street (Baladerian 1991). A child who requires assistance with washing, dressing and other intimate care activities may be particularly vulnerable to sexual abuse. Perpetrators can include caretakers, attendants, family members, peers or anyone who enjoys a position of trust and power. School bullying is also a form of abuse (UNICEF 2007). CWD is at risk of violence and abuse as not only because they have difficulty in defending themselves, but also because their complaints are often dismissed or not taken seriously.

All too often, however, there is a reluctance to recognise the competence of children with disabilities to contribute effectively to decision-making processes. This can be compounded by attitudes of caretakers, teachers and even parents, who may underestimate the ability of certain children to contribute a valid opinion. Changing such views about the ability of these children to participate—or to benefit from support in participating—in discussion and decision-making concerning their lives is critical. It represents a major challenge to prevailing attitudes and preconceptions in all countries, one that must be addressed through training as well as through wider efforts to shift public beliefs and attitudes (UNICEF 2007).

In summary, people with impairments have been ‘isolated, incarcerated, observed, written about, operated upon, instructed, implanted, regulated, treated institutionalised and controlled to a degree probably unequal to that experienced by any other minority group (Davis 1997).

In Hindu scripture, Mahabharata, Dhritrashatra, the blind prince of the Kaurva dynasty of Hastinapur, was shown as possessor of enormous strength and potency. He excelled in all the sciences and arts, in martial arts like mace-fighting and even in archery. Yet he was deprived of his right to be the king of Hastinapur due to his visual disability (Bagchi 2009). Characters like Shakuni (who had an orthopaedic disability) from Mahabharata, and Manthara (a dwarf) from Ramayana were shown with evil intent and as evil characters due to whom lot of misfortune fell on Pandavas and Lord Rama, resulting in wars, death and destruction.

Histories of disability in western societies start their journey in ancient Greece with its idealisation of body shape and fitness linked to acceptance of infanticide for those born with visible impairments. The dread of impairment is reinforced by examples drawn from the bible suggesting that it is a punishment of past sins. There is also ample evidence that everyday life and popular culture were permeated with views that associated impairment with evil and wrong doings and a source of ridicule, fear and pity (Thomas 1982; Barnes 1997). Darwin also wrote and propagated ‘survival of the fittest’, making impairment as a kind of threat to social progress. Finkelstein’s (1980) primary aim was to explain the development of an ideology of disability that stressed ‘personal tragedy, passivity and dependence’. Eugenicists further highlighted links between intellectual and physical deficiency and a range of social evils, including crime, vagrancy, alcoholism, prostitution and unemployment (Kevles 1985).

The nineteenth century and the early twentieth century saw a greater trend towards putting the persons with disability in hospitals and asylums. Here, they were not just excluded, but were controlled by medical practitioners. The image of helplessness and dependence was further perpetuated. Medical monopoly of health care was legitimated by the state. Also emerged, segregated schools for disabled children. So, there were special schools for ‘cripples’, ‘blind’, ‘deaf and mute’, ‘morons’ and so on. The training provided to children in these institutions further ensured their minimal participation in mainstream society and in economic participation, leading to further exclusion. Further, the concept of ‘social hygiene’ gained grounds, where persons with disability were not just put in institutions, but were sterilised so that they could not procreate ‘more of their kind’.

Finkelstein’s (1980) accounts emergence of post- industrial society in the second-half of twentieth century, with the new computerised, information technology identified as harbinger of significant social and economic changes. He interprets this as bringing together more positive opportunities for the inclusion of persons with disability in paid employment, so allowing ‘the most severely physically impaired people…to live independently in community’.

The twentieth century has been marked by a host of social movements, one of the most recent ones being the disability movement. The philosophical foundations of disability studies are rooted in the activism and experiences of the disabled people themselves. The disability rights movement and the narration of the experiences of the disabled people challenged the traditional meaning assigned to impairment based on medical approach. This is contrast to the new meaning assigned to ‘disability’ under the disability studies perspective, which interprets it in social and contextual terms (Chander 2013). The activism began with the impairment specific groups like the blind and the deaf who started demanding equal rights in the twentieth century. The movement spread to include all disabilities and many groups joined the movement.

With increasing consciousness about their identities, the leaders of the new born movement of the disabled people identified themselves as those who were deemed and rendered by society as ‘disabled’. Their slogans reflected this newfound consciousness: slogans like ‘you gave us your dimes, give us our rights now’ became well known (Scotch 2001). Today one of the most popular slogan at the international level of the disability movement is ‘Nothing about us without us’, speaking clearly of a need to take control of decisions affecting their lives, and that persons with disability are not handing over the reins to anyone. Disabled people have come to take greater pride in their identities and begun to demand their rights just like the other minority groups. Hence, the focus has shifted from medical or welfare approach towards social-and right-based approach. The disabled people are not subjects of pity or charity, but have equal right to be counted in for all amenities and opportunities in education, participation, decision making, recreation, just like their non-disabled counterparts.

Disability has been defined differently in terms of medical, social and human rights aspects. The definitions associated with disability have changed over time with new perspectives evolving at a global level as a result of continuous research and discussion among the stakeholders involved in the process of empowering all individuals to be productive members of society.

The diverse approaches to disability can be traced in various definitions of disability. Law, policy, programmes and rights instruments also reflect these different approaches and associated discourses that treat disability either as an individual pathology or as a social pathology. Within these two over riding paradigms- (a) individual pathology and (b) social pathology- the five major identifiable formulations of disability are: the charity model, the bio-centric or medical model, the functional model, the social model and the human rights model. The first two are chronologically prior and reflect the ways disability has been framed historically in many cultures around the world. The latter three view disability as a social pathology and have emerged in recent decades through interventions by disability and human rights activists (National Human Rights Commission 2005). It is worth noting that all the five approaches are still at play in contemporary laws, social practices and the way programmes are designed for persons with disability.

The charity model has its roots in English Poor laws, according to which claims to rights is valid on certain grounds and invalid on certain others. Disability was perceived as a disqualification and perhaps for this very reason, the expression ‘invalid’ became synonymous with PWD. The charity model engineered stringent criteria for groups declared invalid ensuring their exclusion from social arrangements and services in public domain. The charity model-driven interventions, which are intended to be beneficial can actually compromise the beneficiaries’ rights. Since entitlement to rights is often substituted by relief measures, over which the groups declared invalid have little control or power to bargain, the charity model creates an army of powerless individuals dependent on either state sponsored charities or arrangements maintained by individuals (National Human Rights Commission 2005).

In the medical model, individuals with certain physical, intellectual, psychological and mental impairments are taken as disabled. According to this, the disability lies in the individual as it is equated with restrictions of activity with the burden of adjusting with environment through cures, treatment and rehabilitation (Ministry of Statistics and Programme Implementation 2012).

The contemporary bio-centric model of disability regards disability as a medical or genetic condition. The implication remains that disabled persons and their families should strive for “normalisation”, through medical cures and miracles. Although, biology is no longer the only lens through which disability is viewed in law and policy, it continues to play a prominent role in determining programme eligibility, entitlement to benefits, and it also influences access to rights and full social participation (Mohit 2003). The aims of intervention of this model are twofold; one to prevent disability, and second to bring the individuals’ embodied experience in line with conventional standards of normalcy. PWD are positioned as ‘abnormal’ in comparison to the established norms of a normal human being. The limitations of the medical model are evident as it aspires to address problems of inequality by preventing or minimizing the existence of differences by imposing the majority norm of behaviour on inherently different minorities (National Human Rights Commission 2005).

The medical model of disability views people with a disability as having a deficiency or impairment that needs to be “fixed.” Therefore, the person with a disability is the problem, and not the (sometimes) inaccessible society in which that person lives. As a result, “everything is done to help the person by trying to make them more ‘normal’, believing that this alone will lead to a better quality of life.” The ideologies that the medical model is built upon are integral to the segregated model of education. Both see the person and their disability as the problem, and both seek to “fix” the disability, bringing the person as close to “normal” as possible. As put by Ramakrishnan and Anandalakshmy (2009), disability tends to be mystified by the medical model and, as a result, children with special needs are marginalised.

Under the medical approach to disability, disability is the direct consequence of the individual impairment. Therefore, medical cure or rehabilitation is the natural solution for disabled people from the view point of scientific authenticity. Disability activists themselves established the social approach of disability that challenged the very assumption of ‘normality’ and redefined disability as social oppression. In other words, the problems are not within the individual disabled person but within society. Human rights approach conceptualises disability as violation of human rights. This approach challenges the fundamental inequality (Onsando et al. 2009).

A critical analysis of the development of the charity and bio-centric models suggests that they have grown out of the “vested interests” of professionals and the elite to keep the disabled “not educable” or declare them mentally retarded (MR) children and keep them out of the mainstream school system, thus using the special schools as a “safety valve” for mainstream schools (Tomlinson 1982).

Till the nineteenth century, the above two models dictated the care of persons with disabilities. This was mainly considered a charitable act and special organisations run by missionaries, religious and philanthropic organisations established segregated institutions designed to provide care for persons with disabilities; education was not the primary aim of these institutions (Byrnes 1990).

The positive contribution of the model has been in the development of assistive technologies and specialised services. Its failure, however, lies in linking the entitlement to rights with the ability of the disabled person to negotiate diverse environments, with the use of compensatory skills and assistive technologies. The onus is on the individual to fit within the system, not on the system to include the individual. Moreover, in the functional model, the professionals remain in the centre of defining and addressing needs by virtue of their position. In many instances, the key problem with the professionals’ decisions taken in the ‘best interest’ of the disabled person may actually be in contradiction to that persons own goals and life choices (Rioux 2001). Hence, the functional model fails to address the short comings of the environment and social arrangements, and encourages continuous control over the lives of people with disabilities by various state mechanisms and professionals (National Human Rights Commission 2005). Segregated or special schools are hence considered appropriate environments to develop the individual’s functional abilities to cope with the normal, physical and social environment (Alur 2002).

The social model of disability acknowledges that obstacles to participation in society and its institutions reside in the environment rather than in the individual, and that such barriers can and must be prevented, reduced or eliminated. Environmental obstacles come in many guises and are found at all levels of society. They are reflected in policies and regulations created by governments. Such obstacles may be physical—for example barriers in public buildings, transportation and recreational facilities. They may also be attitudinal—widespread underestimation of the abilities and potential of children with disabilities creates a vicious cycle of under-expectation, under-achievement and low priority in the allocation of resources (UNICEF 2007).

In the social model, the focus is on the society, which imposes undue restrictions on the behaviour of persons with impairment. In this, disability does not lie in individuals, but in the interaction between individuals and society. It advocates that persons with disabilities are right holders and are entitled to strive for the removal of institutional, physical, informational and attitudinal barriers in society (Ministry of Statistics and Programme Implementation 2012). The social model of disability doesn’t find the deficiency within the person.

This approach to disability has led to a shift in focus from a child’s limitations arising from impairments, to the barriers within society that prevent the child from having access to basic social services, developing to the fullest potential and from enjoying her or his rights. This is the essence of the social model of disability (UNICEF 2007).

This model rejects the long-established idea that obstacles to the participation of disabled people arise primarily from their impairment and focuses instead on environmental barriers. These include:

Social model views disability as a form of social oppression like sexism and racism. It is viewed like this since the PWD are deprived of opportunities in day-to-day life either due to under-expectation of ‘normal’ people or due to seclusion due to lack of understanding/fear of the ‘deviant disabled’ or due to desire to control lives by taking decisions for PWD and hence rendering them powerless. The sense of ‘cultural imperialism’ is predominant in the discourse of ‘normal lives’ where a nuanced assumption is of the normal way of living being superior and desirable, leaving the disabled oppressed, weak and with a poor self and social esteem.

Emphasizing the social construction of disability in no way implies rejecting medical and professional services and supports. Nor does it mean denying the potential of intervention in reducing or alleviating an impairment or in providing rehabilitation or training. Provision of technical aids, medical intervention and professional support are all important ways of promoting empowerment and independence and are an integral part of the social model. For example, a simple medical procedure may be all that is required to help a child with eye or ear infections to benefit from classroom learning (UNICEF 2007).

The human rights model positions disability as an important dimension of human culture, and it affirms that all humans irrespective of their disabilities have certain rights which are inalienable. This model build upon the spirit of Universal Declaration of Human Rights, 1948, according to which all human beings are born free and equal in rights and dignity (National Human Rights Commission 2005).

At the heart of this mission lies respect for variation in human cultures and the recognition that people are different on several considerations such as gender, race, language, religion and other aspects. We have to respect diversity. Yet at the same time, it is important to remember that all individuals cannot be put in a single mould. Another important dimension is equality and non-discrimination. Yet at the same time, equality has to have with it reasonable differentiation or else we would disrespect individual variations. It does not have to be blind non-discrimination, but a reasonable differentiation which accounts for diversity. Accessibility is an important component of human rights achievement. Accessibility is not just at physical level, but also of social and cultural structures.