The Psychology of Disabled People
Disability research is about researching oppression, and I would argue…that researchers should be espousing commitment, not value freedom, engagement not objectivity, and solidarity not independence. There is no independent haven or middle ground when researching oppression: academics and researchers can only be with the oppressors or with the oppressed.
Colin Barnes (1996, p. 110)
Historically, personalities such as, Sūrdās, the famous Hindi poet, Ashtāvakra, the renowned Indian saint and scholar, Franklin D. Roosevelt, Beethoven, Helen Keller, and many others bear testimony to the fact that, disability did not deter them from contributing significantly to their chosen areas of art, politics, culture, and science. Stephen W. Hawking, a living legend and well-known author of the best-seller Brief History of Time, adds to the long list of achievers who have fought hard to respond to the stigma and discrimination that disabled people often experience. While these names are indeed significant, their excellence, popularity, and success should not undermine the magnitude of the problems facing the millions of people who are disabled, either congenitally or become disabled because of later experiences such as road accidents, war related incidents or natural disasters.
If the individuals named above provide social inspiration, they are also grave reminders of the state of affairs of the issues central to the lives of disabled people. Although an average of 1 in 10 persons in the world has a disability, aggregating 600 million according to latest UN estimates, disabled people are sometimes ‘invisible’, as they are under-reported in the national censuses (Ghai, 2003). UN estimates show the enormity of the disability issue. This vast minority of the disabled generally lives in dismal conditions, and owing to the presence of physical and social barriers, they are unable to integrate and fully participate in the larger community life. As a result, millions of disabled children and adults throughout the world are segregated and virtually deprived of all their rights and condemned to lives of acute marginalization.
The present review attempts to underscore the fact that disability needs to be re-located as a social category, replacing the earlier held construction of disability as a medical category. At the outset, it would be appropriate to mention that the inclusion of disability issues in the present survey is indeed a welcome step, more so, as previous surveys of psychology, wittingly or unwittingly, excluded issues of disabled people from their purview. In context of invisibility of disability issues, Dalal's review of health (2001) has to be duly acknowledged. Despite Dalal's pointer about the paucity of research on the ‘environmental constraints which make physical impairment a disability’ (p. 391), the general scenario has not changed much. While generally disability was not investigated widely, there were attempts that need to be acknowledged. For instance, Alkazi (1992) carried out a review of the state of disability in India. The major causes of disability were identified as vitamin A deficiency, cataract, poliomyelitis, road accidents, household and agricultural injuries, and malnutrition including iodine deficiency. Iodine deficiency was found to be a major cause of mental retardation in north India. Psychological misperceptions and unrealistic appraisals of the illness resulted in a poor understanding of the risk factors and lower acceptance of remedies (Tiwari et al., 1993).
Some contributions, specifically in the area of intellectual impairments, have been made by Sen (2000) and Clarke and Clarke (1996). In a comprehensive bibliographical search of research in the area of mental retardation, in which hundreds of journals in the last sixty years were included, there were no more than three theoretical articles engaging with disability issues.
While in general, ‘disability’ was not recognized as an identity category, deserving more than a cursory glance, some efforts were made to identify some of the social, emotional and personality characteristics of disabled people (Banerjee, 1984). Bhargava (1984) surveyed psychological studies on the orthopaedically handicapped and found that in general, these people were introverted, pessimistic, emotionally unstable, self-centred, and high on dependence-proneness and hostility. These findings were partially supported in a study of male lower limb amputees by Bhojak and Nathawat (1988). These amputees had significantly higher mean scores on body distortion, hopelessness, and neuroticism, when compared to other surgical patients. They seemed to have lost the ability to relate to others emotionally, socially, sexually, and vocationally, and this became their major handicap. Moreover, a serious academic engagement seemed to be lacking. This review makes an effort to examine the available studies, and present a critique while sharing the emerging concerns that need attention in the course of future research. It is pertinent to begin with an examination of the prevalence of disability. The review is presented in four major sections
Prevalence of Disability
The 2001 Census reports that there are 2,19,06,769 disabled people in India in January 2001. The Census, that began a little over three years ago, puts India's disability rate at 2.13 per cent. Of the 2,19,06,769 disabled people, 16,388,382 belong to rural communities and the remaining 55,18,387 to urban areas. While there are 12,605,635 disabled males, the number of disabled females is 93,01,134. The figures of disability-wise break-up has also been given. Visually impaired people account for 48.5 per cent of more than two crore noted in the Census report. This is followed by physically disabled people, who make up 27.9 per cent. Mentally challenged people account for 10.3 per cent, and people with speech and hearing disabilities account for the remaining 7.5 per cent and 5.8 per cent, respectively. A state-wise break-up shows that Uttar Pradesh, India's most populous state, has the highest number of disabled people—3,453,369. Sikkim, with 3.8 per cent, and Arunachal Pradesh and Jammu and Kashmir, both with 3 per cent, figure at the top of the list of states, with a disability proportion higher than the national average of 2.13 per cent. The number of disabled people, revealed by the 2001 Census, is marginally higher than the National Sample Survey Organisation's (NSSO) estimate of 1.8 crore. The Registrar General and the Census Commission believe that these results are more precise as the NSSO figures are only a rough estimate. This is in contrast to the earlier estimates that put the number of disabled population in India close to 70 million (Baquer & Sharma, 1997).
The present Census, as well as the NSSO figures, raise a very significant question with respect to the prevalence rate. Were the earlier estimates wrong? Or is there a politics of numbers that needs to be clearly articulated? Initially the government was not keen to include disabled people in 2001 Census. This decision was taken based on the figures obtained from the 1991 Census. The rationalization was that the 1991 Census revealed a very low incidence that did not warrant the creation of this category in the 2001 Census. What was omitted from the discourse was that the 1991 Census framing of disability was in terms of a total incapacitation. However, no individual, despite the severity of impairment can be totally incapacitated! While the population census has the advantage of providing complete coverage of the population, the accuracy of the information is doubtful as the government data has a tendency to restrict itself to the categories duly acknowledged by legislation. As a result, various categories, such as the learning disability, can get excluded. Therefore, the figures, from both the national head count and sample surveys, need to be accepted with caution.
Since disability is highly stigmatized, the reluctance to divulge correct information exists. Very often it is not the disabled person alone but the whole family, who feel disgraced because of disability of their child/relative. This observation is substantiated by Krefting and Krefting (2002), who compared the prevalence rates of disability between developed and developing countries. According to their investigation, there are many ‘missing people’ in developing countries. Possible explanations include definitional concerns, inaccurate disability incidence/prevalence studies, and a tendency to keep disabled persons hidden and report premature deaths of people who become impaired or disabled. Some regional surveys have also been conducted (Rao, 1990). The study indicates that concentration of people with physical handicaps in rural areas was five times greater than in urban areas. While all the factors that are listed by Krefting and Krefting (2002) are significant, the definition of disability used in the identification and measurement of disabled population is an aspect of higher significance. Before we understand the contradictions in the numbers, it is important to comprehend the definitional aspects of disability.
CONCEPTUALIZATION AND ASSESSMENT OF DISABILITY
Definitions are significant in all areas of human inquiry. Disability as a social category is problematic and extremely complex. Its use has ranged from a metaphorical category to labelling and stigmatizing overtones. Disability potentially can mean many things and covers quite a broad range. A cursory glance at the studies conducted in the last decade shows that a dialogue on definitions really has not got underway. If at all a definition is mentioned, which is quite rare, the field realities do not reflect them. Reddy and Sujathamalini (2000), for instance, use what they term as the legal definition, according to which, ‘a person is said to be legally blind if he has visual acuity of 20/2000 or less in the better eye, even with correction, or has a field of vision so narrow that its widest diameter subtends an angular distance no greater than 20 degrees’ (p. 94) The source of this legal definition is not specified. The authors also provide another definition that is termed as ‘educational definition’. This definition states, ‘blind people are those individuals whose vision is so severely impaired that they must learn Braille or use aural methods such as audio tapes and records’ (p. 95). According to Pattanaik (1997) so far as the term ‘disabled’ is concerned, it is objectively defined as impairment of structures and functions. A disabled person means he is only handicapped partially but can compete with restricted range (p. 17).
Bharadwaj (1995) defines blindness as a
…severe or complete loss of sight which impairs visual information of the person and results in minimising the integrity, confidence and mobility along with the loss of physical background (p. 31).
Very rarely does one finds researchers using and interrogating definitions that are accepted in the international scene or even in the legislation passed in India. One recent example is of Hans and Patri (2003), who do not confine the use of term disability to congenital conditions but also to the disability resulting from accident, disease, and also the inevitable, natural process of ageing. Instead, they view disability as, ‘a comprehensive identity category that cuts across all others and draws its membership from several other identity groups’ (p. 13).
The wider literature on disability uses the WHOs three-fold distinction between impairment, disability, and handicap. In this view,
…an impairment is any loss or abnormality of psychological, physiological, or anatomical structure or function; a disability is any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being; a handicap is a disadvantage for a given individual, resulting from an impairment or a disability, that prevents the fulfilment of a role that is considered normal (depending on age, sex and social and cultural factors) for that individual.
The activists in the disability movement did not appreciate the confusion that WHO caused with this three-fold distinction. They were particularly concerned with the use of the word ‘handicap’ and its medical orientation. In keeping with this view, the Union of the Physically Impaired Against Segregation defined impairment and disability in the following manner:
Impairment [is] lacking part of or all of a limb, or having a defective limb, organism or mechanism of the body. Disability [is] the disadvantage or restriction of activity caused by contemporary organization which takes no or little account of people who have physical impairments and thus excludes them from the mainstream of social activities (UPIAS, 1976).
The WHO definition, which had been extensively used in areas such as rehabilitation, education, statistics, policy, legislation, demography, sociology, economics, and anthropology, following criticisms, was restated in the form of a new definition termed as International Classification of Functioning, Disability and Health (ICF). The ICF classification complements WHO's International Classification of Diseases-10th Revision (ICD), that contains information on diagnosis and health conditions, but not on functional status. The ICF is structured around the following broad components—(i) Body functions and structure; (ii) Activities (related to tasks and actions by an individual) and participation (involvement in life situation; and (iii) Additional information on severity and environmental factors.
Both ICF and ICIDH2, do try to change the meaning of some of these charged words but the definitions are still weighed down with archaic notions and terms. For instance, the ICF defines ‘impairment’ as ‘problems in body function or structure such as a significant deviation or loss’ (p. 10). Although this definition appears less medical and allows for diverse interpretations, it also centres the ‘problem’ in the body and mentions ‘deviation’.
Moreover, by constructing negative and positive terms, that is, by framing impairments as negative, and functional and structural integrity as positive (p. 11), the classification is making shaky assumptions about how these standards will be used by the primary users of the classification. The classification thus still centres the locus of the ‘problem’ in the individual's body. The individualistic ascription of the ‘victim approach’ and the pathology, are camouflaged but are still present.
In India, the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) (PWD) Act, 1995, categorizes disabilities into seven types and defines them primarily in medical terms. For instance, ‘Hearing impairment’ means loss of sixty decibels or more in the better ear in the conversational range of frequencies. Thus, the medical connotations remain dominant and a complete disregard of the socio-political and economic factors is clearly evident The Act uses the broad category of people with disabilities and under its rubric, imposes various functional limitations without really questioning the boundary lines which decide the difference between normal and disabled. However, these limitations have a social and cultural meaning, which unfortunately are not reflected in these definitions. A detailed analysis of the classification is beyond the scope of this review. The pertinent feature is that, not much attention has been paid to the implications of these anomalies in the definitions. Most investigations focus on the numbers and do not undertake any analysis of the different nuances of the definitions, which is unfortunate, as definitions are instrumental in diagnosing a particular condition as belonging to a specific category. In this sense, diagnosis can have far-reaching consequences in shaping the identity of those subjected to its ramifications. The particular definition chosen, thus, has implications for the numbers of disabled people and the incidence of disability in the country, more so, as the measurement is not standardized across different institutions. Disability in such a context becomes a matter of subjective understanding that a researcher or any person has adopted. Nowhere is it more apparent, than in the terminology that researchers use to refer to disabled persons. Before proceeding further, it is important to examine the terms which are used in the discourse of research.
Within documented research, there does not seem to be any uniform terminology that researchers have used to research disability. A cursory glance at the literature reveals that a variety of terms such as—the handicapped (Verma, 1997), blind (Bharadwaj, 1995, 1999; Bharti & Hussain, 1998; Hussain 1992; Ittyerah, 2002), visually impaired (Christy & Nuthetie, 2002; Sangeetha, 1998), learning disabled (Pandey, 2001); special (Abdulla, 2001; Mangayarkarasi, 1999; Manivannan, 2001), disadvantaged (Hussain, 2001), deaf and dumb (Khan, 1999), mentally retarded (Gawali, 2003; Saxena & Sharma, 2000), disabled (Barua, 1996; Jamuna & Ramamurti, 2000; Karna, 2000), children with stuttering (Kusuma & Reddy, 2000), people with disabilities (Mohapatra, 1995) and hearing impaired (Joseph, 2003; Jyothi & Reddy, 2000). What is noticeable, and perhaps a little disheartening, is that no active engagement with terminology has taken place. Among the researchers, the tendency has been to use the terms according to their specific beliefs without integrating it within any coherent perspective. There are instances when within a given study, the terms ‘visually handicapped’, ‘sightless’, and ‘visually impaired’ have been used interchangeably (Deb et al., 2002). As Pal (2002) says,
From the early use of derogatory terms such as lame, deaf, blind, imbecile etc., for the different categories of the disabled, today the language discourse is dominated by terms such as differently able, physically challenged, mentally challenged etc. (p. 32)
This lacuna is surprising, as linguistic stereotyping and the use of unacceptable terms referring to disability have long been a focus of concentrated attention. Discriminatory language, whether outright verbal use or thoughtless stereotyping, has just as much power to exclude as other forms of marginalization and is known to impact on a deeply personal, stigmatizing level. It labels people. In view of the fact that human beings are possessed with the labelling syndrome, we unintentionally use such language to stereotype, construct, and classify people as disabled without looking beyond the individual. The labels need to be understood as social constructions that place the impairment before the individual, and overlook the fact that impairment becomes a disability because of social conditions.
The concern with the proliferating effects of the deficit vocabulary and maintenance of the very problems it attempts to describe becomes fairly acute, when one acknowledges the serious impact it has on the lives of the disabled people. It thus becomes vital for the researchers to identify and intervene in the process through which labelling is done. A scrutiny of the terminology that is used in referring to those identified as physically or mentally different when compared with the so called ‘normal’ becomes imperative. ‘Person with a disability’, has remained a preferred terminology within the formal structural system that works with people with disabilities and within most advocacy and political organizations, at least in India. The reasoning behind this is that the person with a disability is a person first, and the disability is incidental to that. It is a way of fighting against the stigma of disability and re-emphasizing the humanity, wholeness and normalcy of the person. By placing the person first and disability second, language is normally used to avoid the inherent objectification found within the term ‘the disabled’ and to escape the derogatory labels.
For the present purpose, the term ‘disabled person’ is used for placing disability as the first categorical representation of that person. It is done with the understanding that for an individual, disability does become the central feature and the issue of personhood assumes a secondary significance. Historically, the term ‘disabled people’ was used when disability referred to a form of social oppression, experienced by people with perceived impairments and manifested in discriminatory practices (Priestley, 2001: xvii). Another important issue is the measurement of an impaired condition and its associated disability.
Ambiguities in definitions is not only a conceptual issue, as it has implications for assessment of disability which in turn affects policy-making. Measurement issues raise some critical concerns as many of the legal benefits given to disabled persons depend on the percentage of the disability; it, therefore, becomes critical that the criteria that is utilized is objective and open to the reality that some disabilities do not remain stable. Hence, a need for re-evaluation cannot be over-emphasized.
Very few researchers, however, attend to the psychological impact or issues related to certification. Some of the assessment techniques illustrate Foucauldian exercises in disciplinary power. The resulting classifications lead to labelling. Once they become fixed categories, they are never really re-examined. For instance, once a medical certificate is given, reassessment of the disability is never done. Moreover, there is no uniformity in the assessments, as a wide discrepancy is noticed in the certificates obtained from different states or different hospitals within the same state. As mentioned earlier, the fact that there might be appreciable change in given conditions such as muscular dystrophy or polio is, therefore, not reflected in the definitional closures inherent in a one-time certification process. ‘Who is disabled?’ is a significant query that disability research needs to address.
Without a conceptual framework, most researchers assess disability through its generally accepted core domains—physical functions, emotional function, pain, general health, mental health disorders, self-esteem adjustment to condition and adjustment to treatment. While, there have been suggestions that emphasize a need to attend to this task on an urgent basis, the lack of coordinated effort is still evident. This has been recognized in the research. Arora (1997) calls for a proper identification of handicapped and crippled children. There are attempts in which tools for assessment have been developed (Pershad & Verma, 1994). Within the area of cognitive impairments, however, there is no agreement with respect to what should constitute a comprehensive assessment. As Panda (1993, 1996) has pointed out, the assessment principles and procedures are two major concerns for the identification of the disabled. Both qualitative as well as quantitative methods of assessment are required. In this context, he makes a strong plea for Indianization of some of the Western assessment schedules.
Verma (1998), for instance, proposed a model for making a comprehensive assessment of mental disability (mental disorders and mental retardation) based on measurements of IQ, memory (through the use of a comprehensive battery of memory tests), and psychosocial dysfunction. It is suggested that a uniform policy for ratings of mental disability should be adopted. Kar et al. (1995) suggest the use of clinical assessment for the cognitively impaired as an inverse relationship was found between the level of retardation and possibility of assigning a clinical diagnosis. Venkatesan and Choudhury (1995) remind us that normative approaches fail with the mentally handicapped from rural areas. Non-availability of standardized tests coupled with the negative attitudes of rural subjects towards testing procedures make the task even more difficult.
Within the area of learning disability, there is some work on issues of dyslexic children (Karnath & Rozario, 2003). They look at epidemiological, neuropsychological, assessment and advocacy issues in a concerted manner. It can be an important resource for professionals aiming to understand the nuances of learning disability. Some researchers have worked on the assessment in learning disability and autism (Khanna, 1997; Prasad, 1996; Prasad & Srivastava, 1998; Sharma, 1998; Venkatesan & Choudhury, 1995).
The assessment criteria adopted is often incongruent with the cultural context. Daley and Sigman (2002) examined the validity of the Western criteria in 937 Indian psychiatrists, psychologists, and paediatricians. However, there were ‘within group’ differences on the usefulness of individual characteristics and the amount of experience in diagnosing a case as autistic. While research has definitely given little importance to developing tools, the special issues linked to the accessibility of these tools are raised very rarely. The research endeavours to address the issue of certification and its relationship with assessment, although detailed quantitative analysis will not capture fully the extent and complexity of disabled people's experience.
ASSUMPTIONS AND MODELS OF DISABILITY
The studies conducted in India in the last decade do not fall into neat categories. While Western literature has moved to analyse and understand disability as a social category, the same cannot be said of the research in India. By and large a reductionist stance has thus been adopted, in which disability is treated not as a complex life experience that needs to be understood in the context of relationships, rather as a purely ‘individual personal tragedy’, where the disabled person needs to adjust to and come to terms with. Absence of discussion about disability in the mainstream discourses reflect rather sadly the tragic boundaries of ‘normal’ knowledge, that continues to regard disabled people as ‘abnormal’, ‘deviant’, ‘people with special needs’, etc.
The literature thus, is characterized by an approach that has naturalized impairment and disability. There is a preoccupation with individual adjustment to cope. The overarching hypothesis is that of overcoming the limitations imposed by the impairments. Quite a few of these studies have been reported from the rehabilitation settings such as national institutes and hospital settings. For them, attention to the problems presented by a ‘patient’ seems to be a natural process. The other settings in which disability has appeared is in the academic and research institutions, where researchers perhaps, need to identify a variable that appears workable. Though the rationale for choosing disabled people is not specified, it is conceived as a polar opposite of normal. How this ‘normality’ is attributed is never really spelt out. As Misra et al. (1999) point out,
Psychology did not empower people to choose. The mode of conducting psychology involved power relations: One person (experimenter) made another (subject) object and considered herself or himself superior to the subject being studied (p. 46).
The research in the last decade about the psychology of disability, thus seems to be based on three assumptions—(i) disability means that there is a functional limitation, (ii) disability is something that the individual has, or possesses, it is part of the individual who is defined in medical terms; ‘disability’ thus, means a chronic personal impairment, and (iii) the psychological reactions of the individual are all interpreted in terms of reactions to personal dysfunction.
In other words, the psychology of disability often becomes the psychology of how the given researcher positions physical impairment. Since disability is experienced as a negative personal attribute of a patient, or someone in need of assistance, the construction of a disabled person in this situation is in fact not a ‘psychology of disability’ but more a ‘psychopathology of disability’ (Finkelstein, 1990; Goodley & Lawthom, 2005). For instance, doctors who only see physically ‘impaired’ children needing treatment can start to believe that all disabled children need treatment. Under these circumstances psychological reactions of disabled people are interpreted as pathological. This understanding reduces the identities of the disabled to medical categories, thereby limiting their scope for social and cultural participation. Segregation in mainstream education, employment, difficulties in public transport and absence from the labour market, become markers of a disabled identity. Far from being beneficial, or even neutral, medical constructions have been at the core of creating the notion of disability, as very profoundly the ‘other’. Furthermore, the very notion of incapacity, in the medical vocabulary, not only assumes a biological dysfunction, but also that this dysfunction is the root cause of disability. The position, clearly absolves social arrangements from both causation of and responsibility for disability. This understanding can be read as a cultural interpretation of the policy of incapacitation and confinement. A veteran scholar in disability studies sums up, this view with his observation that
The individual model for me encompassed a whole range of issues and was underpinned by what I called the personal tragedy theory of disability. But it also included psychological and medical aspects of disability…In short, for me, there is no such thing as the medical model of disability, there is instead, an individual model of disability of which medicalisation is one significant component (Oliver, 1996, p. 31).
The discourse asserts, both implicitly and explicitly, that disability is a personal tragedy, thereby becoming the root cause of the most intrusive, violating, and invalidating experiences that the disabled go through with the medical field.
The personal tragedy model posits a ‘better dead than disabled’ approach and reinforces the stereotype that the disabled cannot be happy, or enjoy an adequate quality of life (QOL). As Dalal and Pande (1999) point out, ‘one notable finding was that the family respondents held that, in general, people with disabilities could not do much in terms of becoming economically reliant’ (p. 71). Though the authors point out that this interpretation is linked to the exacerbating poverty experienced by the families, it is true that the disabled person's problems are perceived to result from bodily impairment and a troubled mind, rather than the failure of society to meet that person's needs in terms of appropriate human help and accessibility. This understanding places specific burden on the disabled to reconstruct themselves as normal people. The implicit assumption is that disabled people do not want to acknowledge their own identities. Consequently, disabled people are subjected to many disabling expectations, for example to be ‘independent’, ‘normal, and to ‘adjust’ and ‘accept’ their situation. These expectations can lead to unhappiness, and damage the sense of self of the disabled person far more than the impairment itself.
The tragedy model of disability personifies at one level the fear of death, and can be read as an attempt to deny the inevitability of death. An alternative account, however, suggests that the tragedy perspective has a rational, cognitive basis, constructed through experiences in a disabling social context (Swain & French 2000, p. 573). Basic to comprehending a non-disabled person's view of disability is the possibility of crossing the gulf between the binary of disability and ability. It is true that the non-disabled are ‘TABs’ or ‘temporarily able bodied’. Consequently, unlike the split between the people of different genders or different castes, non-disabled people daily experience the possibility of becoming impaired and thus disabled. As Zola (1982) argues,
…any person reading the words on this page is at best momentarily able bodied. But nearly everyone reading them will, at some point, suffer from one or more chronic diseases and be disabled, temporarily or permanently, for a significant part of their lives (p. 242)
Thus, the fears are not so ‘irrational’ as the underlying cause has a very strong rational base. However, the fears definitely operate at the level of the unconscious. On the contrary, this casual link becomes intrinsic to the tragedy model. To become orthopaedically impaired, for instance, will be a personal tragedy for someone whose life is based on mobility and who lacks knowledge of the experiences of people with mobility impairments. For such a person, self-identity is founded on being able to walk. For him/her, the inability to walk would definitely imply a personal catastrophe and a thoroughly devastating experience. The feeling of disaster gets compounded by the observation of the very real difficulties that the disabled have in education, work, and relationships. Such harsh realities create a further divide between the disabled and the non-disabled, particularly through the association of disability with dependence and abnormality. To be non-disabled is to be ‘not the unfortunate one’, the bechara/bechari (poor thing). It is in this context that Shakespeare (1997) has used the concepts of ‘otherness, anomaly and liminality’ to critically examine the cultural representation and social exclusion of people with impairments. According to him,
…disabled people could also be regarded as Other, by virtue of their connection to nature; their visibility as evidence of the constraining body; and their status as constant members of mortality. If original sin, through the transgression of Eve, is concretised in the flesh of the women, then the flesh of the disabled people has historically…. represented divine punishment for ancestral transgression. Furthermore, non-disabled people define themselves as normal in opposition to disabled people who are not (p. 228).
Confronted with this image, which is imposed on the disabled who is cast as the Other, the tragedy model of disability and impairment is often internalized by the disabled people. The oppression that stems from a multitude of stigmatizing factors appears to have a rational basis, which explains why it is so difficult to question the tendency to self-blame and guilt that the disabled carry with them. Living through a daily onslaught of professionals, experts, family, and media invalidating their disability experience, the expression of resistance is likely to be interpreted as unrealistic. It will on the contrary, be construed as lack of acceptance, unnecessary bravery, compensation or can just simply be ignored. Non-recognition of the oppressive structures of society and rights of the disabled people accentuates the problems experienced by the disabled. Similarly, for a non-disabled person, whose life is constructed on the basis of being normal, the impairment is experienced as a tragedy, perhaps augmented by the trauma of illness or accident.
Thus, the medical model with its clear interpretation of disability as a personal tragedy encourages the disabled to ‘rise above’ and transcend the body. Whatever difficulties they experience are expected to be withered away by overcoming them. Discouraged to pay attention to whatever aches and pains that might be experienced, the disabled are expected to go about their lives as though their bodies are immaterial. Indeed, it is because the body is held in such a contempt that we find ourselves living in a world that is structured as though everyone can walk, work, and play at a pace that is not compatible with any kind of disability.
Hence, the belief that there is more to their personality than purely the individual differences, underwrites their lives. Dalal's (2001) critique of ‘findings about dispositional characteristics of disabled people are inconsistent and do not warrant a conclusion’ (p. 391) is applicable to empirical research that continues to focus on the self-perceptions, and different personality factors that presumably are a consequence of having an impairment. Mostly, psychometric techniques and semi-structured interviewing have been utilized. All disabilities are represented in this endeavour. A closer look at the studies is required before proceeding any further.
One of the main struggles of disabled people is against the medical model of disability. As has become apparent, psychological research in India has also tended to portray disability as a pathology, defect, abnormality or dysfunction. Such assumptions have historically been associated with stereotypes that depict disabled people as somehow inferior, lacking or ‘not quite whole’. Also, by distinguishing between the ‘experts’ and the ‘patients’, the medical model discounts the lived experiences and knowledge of the disabled people and gives them little opportunity to contribute to the analysis of their own situation. In many ways, they are pressured to submit to ‘medical expertise’ and adopt a passive and dependent role.
The Social Model
The medical model has been challenged by what is commonly known as the social model, also termed as the ‘socio-political approach’ (Karna, 2000). This model challenges the assumption that both problems and solutions lie within disabled people rather than within society. The onus of failure to conform for creating disabling environments, therefore, falls on the societal expectations. The model stresses that disability is not a contagious disease. In this sense, while impairment might be an individual attribute, disability is described as the outcome of an oppressive relationship between people with impairments and the rest of the society (Finkelstein, 1980). The social model challenges the assumption that both problems and solutions lie within disabled people rather than with society. The social model does not deny the problem of disability but situates it squarely within the society. It is not individual limitations which are the cause of the problem but it is society's failure to provide appropriate services. The model was born out of the experiences of the disabled people, challenging the dominant individual models espoused by the non-disabled people who fail to accept that the disabling factor is not the wheelchair user, but the built environment which has zero accessibility. Negative attitudes, limited physical access, limited access to communication and resources, are considered as impediments that interfere with the disabled individual's to actualize his/her potential in the desired roles. The model thus, focuses on disability as a diversity of human condition and not as an undesirable trait to be fixed or cured. A social model of disability is thus, socially constructed much in the same way as gender is socially constructed. This perspective, views the locus of the problem to be addressed by services and supports within the social context in which individuals interact.
The subject thus, shifts from them to us, from what is wrong with them to what is wrong with the culture and environment that has been organized for them. The clarity that in addition to the primary impairment, the disabled person faces a hostile environment, characterized by a design apartheid where building form and design are inscribed with the values of an ‘able-bodied’, society makes the questioning of disabling environment a primary question. The inaccessibility of the built environments that was not designed to incorporate a range of bodily differences becomes evident. Research into these barriers is extremely important, as they have a direct causative impact on the well-being of a disabled person. Lack of access to communication, be it in the form of availability of Braille materials, augmentative measures, or sign language training, adds to the oppression experienced by the disabled. While these factors contribute to the experience of oppression, the research that does not recognize these limitations also becomes a partner in accentuating the oppression. Some of the differences that psychological research has found may actually be a reflection of the normative nature of the assessment tools. That some research studies recognize this anomaly is indicated by attempts to translate the tools in Braille form (Reddy, 1996), or use of sign language (Kothari & Kothari, 1998).
The social model challenges the view that the human being is flexible and alterable, while society is fixed and unalterable. According to this approach, disability does not imply broken persons, but inadequate identifications neatly tuned to the workings of the normative structures, serving political and economic ends. What is required is a reconsideration of the cultural equations, more so, if we want to create a society that would allow a proper social life for those who could be left out, dropped out, and locked out of current arrangements. It is, therefore, one kind of problem to be impaired, and another kind of problem to be in a culture in which the impairment is used to produce disability.
Table 2.1 Models and Explanations of Disability
|Materialist explanations||Idealist explanations|
|The units of analysis are impaired bodies.||The units of analysis are beliefs and identities.|
|The units of analysis are disabling barriers and material relations of power.||The units of analysis are cultural values and representations.|
Priestley (1998) suggests that both the individual and social models can be further divided on the basis of their materialist- or idealist emphasis. For instance, an individual model can focus on two parallel themes—one focused on the measurable characteristics of the body and its physical or cognitive functioning (a biological model of disability), and the other focused on the negotiated aspects of individual identity and adjustment (a psychological model of disability). Similarly, social model accounts also tend to focus on two themes, namely, the role of cultural values and representations (a cultural model of disability), and political economy and disabling environments (a structural model of disability). The four positions have been summarized by Priestley (1998) in Table 2.1.
DISABILITY: A SOCIALLY CONSTRUCTED CATEGORY
The social model posits disability as a social construction. In their classic work on the social construction of reality, Berger and Luckman state that humans produce their world and themselves within their world, through interaction with the environment. This process is essentially cognitive in nature, with language playing a key adaptive role. As they say,
…the developing human being not only interrelates with a particular natural environment, but with a specific cultural and social order, which is mediated to him by the significant others who have charge of him (Berger & Luckmann, 1967, p. 48).
Wendell (1996) for example uses social construction and sees disability as socially constructed,
…in ways ranging from social conditions that straightforwardly create illness, injuries and poor physical functioning to subtle cultural factors that determine standards of normality and exclude those who do not meet then from full participation in their societies (Wendell, 1996, p. 36).
Similarly, Bogdan and Taylor (1989) illustrate the social construction of a typical severely disabled person in their study. They discuss the case of 20-year-old Jean, who cannot walk or talk. As they elaborate further,
Her clinical records describe her as having cerebral palsy and being profoundly retarded. Her thin short—four feet long, forty pound-body, atrophied legs, and disproportionately large head makes her an unusual sight. She drools, rolls her head and makes seemingly incomprehensible high pitched sounds. But this is the way outsiders would describe her, the way we describe her as sociologists encountering her for the first time…. To Mike and Penny Brown, Jean's surrogate parents for the past six years she is their loving and lovable daughter, fully part of their family and fully human (Bogdan & Taylor, 1989 p. 138)
Thus, disability is a powerful social construct within most existing societies and because we are presented with conflicting images of it, disabled people have been placed into the role of the abnormal outsider, whose lives and experiences are hidden from the ‘normal’ majority. Once this conceptualization gets established as a fact, any attempt to, say, dislodge it as a mere perception is fraught with difficulties as it is impossible to screen out what is deemed as purely objective and real. As Gallagher (2001, p. 643) puts it, ‘things are what we make of them because we cannot disentangle things from meanings or distinguish facts from values’. The critical issue, therefore, is that disability is used as an explanatory term depicting the appraisal or more accurately, a de-evaluative verdict brought to a given condition such as, not being able to see, hear, read, think, memorize, or act in accordance with culturally acceptable standards.
While the social model is a viable approach to be given due concern in the Indian context, one problem that is inherent in it needs to be recognized. Notwithstanding its rightful attack on the disabling environment, the model still preserves the distinction between impairment and disability, thus, presenting it more as a dichotomy. Consequently, while disability is valorized, impairment is made speechless. This split can be really problematic because it ignores the reality of the lived body. Historically, this was seen as a politically useful strategy, so that the medical discourse associated with disability could be eliminated. While it is beyond the scope of this chapter to delve deeply into this debate, it is being highlighted so that it can provide some useful insights for future research. The result of excluding impairment from the discourse has been that to date it remains a medical and psychological problem to be cured or rehabilitated. In fact, the disabled body and the larger societal constructive meanings associated with disability has lead to the conclusion that our physical bodies are something to, at worst, be ashamed of, and at best, to be ‘managed’. The tragedy is that these images have been internalized to the extent that self-perceptions become our own psychological monsters. Consequently, the discussions tells us very little about how the impaired body is constituted as the Other, and viewed as atypical and unfortunate, life does not seem worth living. While in the face of this intolerance, it is indeed significant and essential to assert that anatomy is not destiny and focus the disabling barriers. It is this phenomenological reality to which psychological inquiry can contribute immensely. However, unfortunately not much work has been done in this sphere (Ghai, 2003).
Another way of conceptualizing disability is provided by Susan Gable (1998) who puts forward an aesthetic theory of disability. According to her, the development of one's ‘embodied self’ through the process of experiencing life is significantly influenced by personal interpretations, that are unique for each individual disabled person. The disabled body interacts within a social environment but ‘identity itself starts with the body: what the body does, how the body looks, what the body says, how the body feels, and how others experience that body’ (Gable, 1998, p. 12).
In developing a theory of an aesthetic of disability, Gable (1998) elaborates further:
When I say ‘I am disabled,’ I say something about the culture within which I experience life, its values, and its norms. I also consider my disabled-ness in light of my other body experiences (gender, ethnicity, race, sexual orientation) and how those are constructed and valued or de-valued in culture. Finally, if my statement appears to disagree with the prevailing notions of my culture, then my claim is one of resistance to those notions, and, in the end, my claim collaborates with my culture to construct my disabled body. In the end, my statement says much about me and how I view my body and my self but it also say much about the others with whom I experienced my world (pp. 74–75).
It is important to note that there can be an intersection between the different models. The focus of psychological approaches however, has been on individual factors without any consideration of the social factors. Before proceeding further, it is important to understand the connotations attached to disability in the Indian context.
DISABILITY IN THE INDIAN CONTEXT
A glance at the literature reveals that in the Indian context there are several themes that run through the understanding of disability. While the medical framing of disability is well known, the cultural understanding of disability has several interesting features. For instance, Miles (2002) while tracing the historical and cultural roots and heritage of disability services over the past millennium in South Asia, begins with a dream that was recorded in Zoroastrian scriptures. This dream visualizes a ‘perfect world’ in which there were no disabled people. The dream fits in with the hegemony of ‘normality’ that characterizes societies at large in which any kind of difference is marginalized.
A dominant theme that has been articulated in the writings of various scholars (Dalal, 2002; Ghai, 2002a, 2003; Miles 2002; Sen, Anima, 1988) concerns the causation of disability.
Within the larger Indian community, disability is understood as a punishment for past sins. As Dalal (2002) elaborates,
…this theory implies that if one has committed misdeeds in previous births, one has to inevitably bear the consequences. Disability is held to be a punishment for the sins of previous births and one is called upon to accept it as divine retribution. This notion of a just world is firmly ingrained in the Hindu mind and is frequently invoked to explain whatever happens in one's life. Belief in the theory of Karma has very often led to a ready acceptance of physical disability, with little effort in the direction of improving life conditions. It is presumed to be a deterrent to collective efforts put in by persons with disabilities to assert their right of equal access to social opportunities (p. 18).
When pain and suffering are accepted as fate and a learned helplessness becomes a life trait, the internalized oppression can be quite difficult to overcome. More so, when very few people respond to the needs of disabled, denying them access to social, political, and economic opportunities, disabled people or their families cannot help but respond to their life situations in a resigned manner. A parent from a remote village in Assam laments, ‘What can I can do now? It was in my destiny to suffer, and that's why God gave me a disabled daughter! Must be a punishment for my past sins’. Thus, disability is seen as a retribution for past sins. This belief has been strongly entrenched in the psyche of the Indian society.
Dalal (2000a) studied causal beliefs of hospital patients who were under treatment for a wide range of physical diseases—coronary heart disease, tuberculosis, cancer, and orthopaedic problems. These patients consistently attributed their physical problems to their own karma. In general, causal attribution to metaphysical factors (God's will, fate, and Karma) was consistently high. Similar findings were also obtained in the case of physical disability. These patients, however, did not attribute their recovery to their karma, as much as to the doctor, God, and other factors. It may be mentioned here that most of these patients were rural, uneducated and from poor families. Similarly, a study conducted in rural areas by Dalal et al. (2000) validate the findings of Dalal.
However, while fate is the agency to which eternal order is attributed, the doctrine of karma (action) does not allow passive resignation. The potentiality of change is embedded within the religious beliefs. It is possible to repay the debts and work for a better rebirth. This induces an attitude of tacit acceptance and fight (Ghai, 2001a), belief in karma in this sense helps people in understanding their own (and others’) angst. In case of paraplegics, those who could rationalize their tragedy, fared better in the recovery process as compared to those who had no explanation whatsoever. A sense of desolation and hope are thus entertained together. Paranjpe (1986) indicates that karma can keep the faith of a just world intact and convince people that good deeds will ultimately result in good outcomes. In his work with hospital patients, Dalal indicates that attribution of the disease to karma had a positive relationship with their psychological recovery.
Undoing of the past karmas remains a distinct possibility. Miles (2002) cites a transgression, that is, mimicking the stoop of a deformed holy man, which earned a ‘corrective’ rebirth as a hunchback for Khujjutara, who appears in the Jatakas and later Buddhist literature. Khujjutara played a substantial comedy part in Kusa-Jataka, taking ample advantage of her role as privileged nanny, even locking her royal mistress Prabhavati into a room and generally throwing her weight around. Her more serious role came when, as servant to Queen Samavati, she was converted under the teaching of the Buddha and promptly reformed her previous fraudulent practice with the queen's petty cash. The same day, she was invited to preach the law to 500 women at court, and soon attained a pre-eminent position as a teacher.
Another belief is that suffering was inflicted on good people to test their resilience and inner strength. People did not cease to make efforts to cure the disease. As Joshi (1988), in a study of tribal people in the foothills of the Himalayas observed, that people are pragmatic in their causal attributions. When they see the possibility of medical intervention they approach it, while keeping their faith in traditional healing methodologies. The patients intuitively learn to keep these two aspects of the disease separate. Kleinman (1988) in his extensive work, in the South Asian context, found that in all these places, traditional healing and biomedical treatment co-exist and are not perceived as contradictory.
Historically, disabled people were never identified as a separate group, nor were they segregated on this count (Dalal, 2002). However, this lack of segregation, did not amount to mainstreaming. According to Prabhu (1963), destitute, widows, aged, diseased, and disabled people were often classified within one category. Clearly, the only common strand linking these otherwise disparate conditions being their difference from the dominant social construction of normality. There are also instances of protection provided by benevolent kings and nobles for the benefit of all those who had no other place to go, whether their problem was social, economic, or physical. This kind of protection continued all through the medieval and colonial era (Miles, 2000). Miles (2000, 2002) and Dalal (2002) indicate that within the context of religious orientation, the state's involvement was evident. For instance, within Islam, the notion of zakat—giving of alms, and in Hindu dharma the idea of punya karya—lead to community provisions for the disabled people in the reign of Sultan Balban (1266–1287). Miles further mentions a pension arrangement, whereby military men were allowed to receive land as an income in case they became old and infirm, and were no longer functional. Elliot and Dowson (1976), in a recording of history as given by Indian historians, mention that Firoz Shah (1351–1388) instituted a ‘wrongful disablement’ scheme to compensate people who had unreasonably been ‘deprived of a limb, nose, eye, hand, or foot’ under the stern rule of his predecessor Muhammad Shah. In the 1540s, it was reported that destitute people—that included blind, the old, the weak in body, widows, the sick—were given stipends from the treasury of the town. Thus, a state involvement is reflected in these earlier reports.
Philanthropic gestures are also reported by Miles (2002). He cites Manimekhalai, a Tamil social worker, who would feed disabled beggars everyday. Miles further cites the law code of Brihaspati, possibly dating between the 4th and 6th centuries. There were attempts to form village cooperatives or artisans’ guilds, binding themselves to perform certain charitable activities, for example, construction of a travellers’ rest house and relief with a stipulation that the idiotic, the aged, the blind, women and children, afflicted or diseased persons would be the recipients (Miles, 2002). In part, these gestures are rooted in religious doctrines that urged people to show pity and compassion to all those who are suffering. Manu Smriti, the ancient Hindu charter of social conduct, impelled people to spare a part of their material resources for their hapless fellow-beings; to support their daily living (Prabhu, 1963). This is also evident in Ganguli's (1970) translation of Mahabharata in which he cites the case of Draupadi, who daily served ‘the deformed and the dwarfs’ before taking food herself. There is also a mention of Yudhishthira who refers to the ‘many hump-back and lame ones’ among the servants; and enquires after the welfare of those who are
…defective in limb, those that are imbecile, the dwarfs to whom Dhritarashtra gives food and raiment from motives of humanity, those that are blind, and all those that are aged, as also to the many that have the use only of their hands being destitute of legs (Ganguli, 1970, p. 29).
Even in this inquiry, Yudhishthira is convinced that sins must have been committed in the former lives. While help is being provided, the conviction that disability is a logical result of the past karma is never dislodged. This finds reflection in Miles (2002) listing of ‘undeserving’ recipients of charity. It not only includes ‘immoral persons’, but people with physical and mental disabilities, who are all assumed to have been immoral in an earlier existence. Miles cites Shanti Parva, a part of a lengthy death-bed discourse by the revered Bhishma, on how to run a country properly while also saving one's soul. Feeding an unrighteous person might merely have the effect of assisting that person to continue in evil ways, thus reinforcing immorality. Helping the undeserved, thus, has to be avoided. Also, the major beneficiary of the help rendered is the donor not the recipient, although Dharmashastras called upon all householders to look after the weak and disabled, and those who did do so, were ensured a place in heaven. Such care was to be shown without expectation of any returns (Kuppuswamy, 1997). Thus, traditional Indian narrative is interplay between the role of culture/religion and the state in promoting care for the disabled. Charity and philanthropy, however, remained the predominant responses to the predicament of disability without ever overlooking the individual's own contribution in the form of his bad deeds. The reflections of this paradigm are evident as many institutions regularly receive food, old clothes, and money from society at large, that makes these charitable gestures, not out of a sense of commitment to the issue of disability, a response to a cultural expectation to do one's dharmic (religious) duty toward the needy, in the same spirit as one would give alms to beggars. However, what is also evident is that Indians, in general, have an ambivalent attitude towards people with disability. In dealing with someone with a disability, people are caught in a dilemma and are likely to experience anxiety. Some other historical and mythological connotations have been analysed by Ghai (2002a). Disability is, in her view, construed as depicting eternal childhood, deficit, evil, and was embedded in an overcoming thesis. For instance, one strand of this cultural construction conceives of disability as eternal childhood, where survival is contingent upon constant care and protection. Here, the emphasis is on images of dependency, thereby reinforcing the charity/pity model. Dalal (2002) too indicates a parent–child type interaction pattern characterizing all social relationships of disabled. In traditional Indian families, children are the shared responsibility of everyone. Children are considered dependent, immature, and incapable of taking decisions about their own lives.
Another strand considers disability as a flaw and deficit. This attitude that is deep-rooted, and its traces can be found in the traditional texts and scriptures and even social narratives such as the epic Mahabharata in which Dhritarashtra, the older but blind son of King Santanu, is deprived of being crowned as the king, as is customary after the father's death, because, being visually impaired, he is perceived as deficient and thus, not competent enough to become the ruler. Instead, his younger brother Pandu, who is a non-disabled person, is nominated as the king. The idea that loss of sight does not impact the entire functioning of the individual is overlooked and underplayed. The unfolding of the story reveals that when Pandu dies, Dhritarashtra is appointed as the ruler but only till Pandu's sons are old enough to rule the kingdom. This is ironical as when there is absolutely no choice, Dhritarashtra's impairment ceases to matter. However, his own right to the crown has been sacrificed because of his disability. Unable to fight this oppression, Dhritarashtra fuels his son Duryodhana's aspirations to acquire what he considers rightfully ‘his’ royal claim to kingship. While conventional interpretation sees Duryodhana as the evil-hearted person responsible for perpetuating the final war, what gets overshadowed is the internalization and transfer, both at a conscious and unconscious level, of the pain, hurt, and anger experienced by a man who is stigmatized as blind.
The note of empathy (if it can be called that) comes from his wife, Gandhari, who blindfolds herself, so that she can experience life in its incompleteness as her husband does. Such a stance can be problematic both to the feminist as well as the disability theory, as it deals with a very sensitive issue of ‘caring’. The notion that carers are sacrificial lambs is extremely disturbing to disabled people all over the world. Another connotation that stems from this instance is that a disabled person cannot partner one who is normal. But a woman, Gandhari, cannot be given greater powers and capacity than her husband, hence, she takes on the position of a co-/fellow disabled. The situation will be too familiar to millions of disabled, who are thwarted of their rightful place in the society as the stigma of disability treated as a deficit is attached to them. Be it education, employment, or participation in the everyday activities of life the implicit and explicit message of deficiency cannot be overstated.
From the psychological point of view, another nuance that is implicit in the epic Mahabharata is that of ‘mother blaming’, encountered very often by the mothers of disabled children. While it might not come up as an active protest, the understated implications will be hard to miss. An insight into the reason for Dhritarashtra's blindness will make this point clear. Mother blaming is evident in stories of the pregnancies of Ambika and Ambalika. Not expecting the ugly, the former closes her eyes and latter turns pale. Further validation of this belief comes from Vidura—the son of an untouchable dasi who felt no revulsion for Vyasa—and bore the most intelligent and competent of the three sons!!! Thus, the onus being on the reaction to disability rather than disability, per se, is quite clear. This understanding fits in very well with the social model understanding of disability. While the myth is problematic at many levels, there is a clear indication of mother blaming here. The onus for the son's blindness thus lies in his mother's reaction. The narrative also implicitly constructs a perfect and handsome body of Bhishma as the ‘desired’ while the deviation in the form of Vyasa is undesirable. Dalal (2002) also highlights the sense of guilt, that parents suffer for the disability of their children. ‘Often, they consider themselves as responsible (in a metaphysical sense) for all the suffering of their children, about which they can do nothing’ (p. 18).
Yet another strand focuses on disability as being inherently evil in nature. The deviousness of the social constructions is apparent in the evil characters of Shakuni and Manthra. Shakuni who is Gandhari's brother, is representative of the matriarchal link, thus, disabling him also renders disabled the rights that stem from matriarchal lineage. Further, notwithstanding his own disability, he is out to avenge the fact that his sister had to be married to a blind man. However, his disability does not deprive him of exceptional cheating skills at dice. Manthra is a woman with a hunchback. Kaikeyi, the third wife of King Dasaratha, though extremely fond of Manthra, is somewhat doubtful of her as she believes that one should treat the blind, lame, hunchbacks, and dwarves as evil and treacherous. Despite Kaikeyi's initial doubts, Manthra successfully influences Kaikeyi against the king and Rama, his first born heir. Even when Kaikeyi is at a loss to find ways to convince her husband about her desire, Manthra reminds her that the king promised her two boons, which Kaikeyi had not claimed. So, there will not be a better time to ask for their redemption and claim her right.
Manthra's love and affection for her own mistress is overshadowed as she is perceived as the instigator of Rama's banishment to the jungle for fourteen years, followed by the death of the King. The surprising feature is that in the public mind, both Manthra and Shakuni, are remembered as deformed and wicked or evil. Their powerful use of strategy is not highlighted, as if recognition of the disabled as human and ‘normal’, and thus loyal, do not go together. It is interesting to note that very few people are given names of Manthra, Kaikeyi, and Shakuni as they are constructed both as evil, and evilness is presumed to be located in their deformed bodies.
Paradoxically the wrath of the disabled is also to be avoided. These attitudes are reinforced by stories, as that of King's Dasaratha's, whose death is retribution for his killing Shravan Kumar, who is a devoted son of blind parents and their only anchor. The king kills him mistakenly when Shravan is fetching water for his parents. It is his parents’ curse that the king too would pine for his son; the belief that the curse given by the blind parents of Shravan Kumar is effective that creates a fear of the disabled. Such fears are yet again positing the disabled as people to be avoided, and the de-construction of these anxieties are hardly ever undertaken.
Another narrative that departs from these constructions is about Ashtavakra, who promises to impart knowledge to king Janak. Ashtavakra's body was marked by eight different deformities. (Ashta means eight and vakra means twisted). His massive deformities evoke laughter and doubts about his abilities. An unperturbed Ashtavakra, however, brings the attention of the king that his courtiers were only attending to his outer appearance and not to his soul. Such positive constructions, however, are not given enough publicity. Disability thus, retains its stigmatized existence, and though the message to overcome it is given to every disabled person, there is no consideration accorded to the depth of the pain and emotionality it entails. Further, the fact that ‘overcoming the impairment’ is rooted in the traditional medical model is hardly ever recognized.
The above instances, though not exhaustive, illustrate the underpinnings of a negative cultural identity attributed to those with disabilities. Historically, alternative narratives have indicated instances where disabled people have been considered children of a ‘lesser god’—a status that provided spaces, in spheres of religious and metaphysical discourse, where the ability to transcend the body stands as a distinct possibility. By not acknowledging the centrality of the physical body, these alternatives did provide the possibility for a dignified negotiation of difference. For example, persons with hearing and/or speech impairment were employed by the kings in medieval India to copy confidential government documents (Miles, 2000). Dalal (2002) points out that in south India, visually impaired people were assigned the jobs of making flower-garlands as well as music teachers. Dalal (2002) further points out that,
…among Muslims, visually impaired people earned a livelihood by teaching and reciting from the holy Quran. People with orthopaedic disability were considered for a variety of jobs. Those who had severe deformities (or dwarfs) were considered fit for circus and as court jesters (p. 21).
Even though in some instances, assigning such a status to disabled people implied renunciation of their material bodies (in service to God), such narratives did offer a metaphysics that was more humane than the oppressive lives that characterized disability.
However, contemporary constructions of disability in India do not draw systematically on historical and cultural research (Miles, 1999). Some research, not necessarily by psychologists, focuses on representation of disability in films (Bhambani, 2003). According to her, Hindi films portray the disabled as dependent on society. They appear as confined to their homes, full of self-pity and wanting an escape from their dysfunctional physicality. They largely portray disabled people as possessing a medical identity, perceived from a predominantly health and welfare perspective. The medical model, which focuses on the clinical dimensions of impairment, dominates policy. For instance, the latest Indian Human Development Report states that ‘physical disabilities are genetic, biological and even birth defects and future research must focus on the causes of such disabilities’ (Shariff, 1999, p. 148). Such a policy stance makes medical intervention, without any regard for cultural analysis, the sole instrument for addressing disability. The Indian milieu offers very little understanding of the social model of disability, arguing that it is society that disables people with impairments, and, therefore, any meaningful solution must be directed at a societal change rather than at the individual. Rather than locating the disability in the body, the social model conceives of disabled people as an oppressed group in society.
SEARCH FOR A ‘DISABLED’ PERSONALITY
The studies reported in this section are, by and large, atheoretical, rooted in an empirical mode of inquiry and assumptions, that allegedly allow a connection to be established between the physical or mental impairment and personality, need structures, and self images. The research questions that have been investigated examine the role of disability as a causal factor that determines variations in cognitive and non-cognitive functioning. These studies have focused on disability, without going into the interfaces of disability with class, caste, gender, and other contextual and demographic factors. The discourse can evolve only when the label of disability ceases to serve as an independent variable, with a substantial understanding of its theoretical overtones. An account of such studies is presented here.
Christy and Nuthetie (2002) studied the self-perceptions of visually impaired children. Their study used a detailed questionnaire, on expression of affect, needs, wants, preferences, and decision-making. The participants sample consisted of 50 children in the age range of three to ten. The subjects had no significant problems expressing moods and feelings, preferences, and decisions, indicating that self-perceptions were strong. The researchers indicated that concepts get stabilized very early in childhood than at any other stage of life. Jyothi and Reddy (2000) compared the personality profiles of hearing impaired children and the ‘normal children’. Using the children's personality questionnaire; they indicated that, that hearing impaired have poor personality development. Supporting evidence is all from studies conducted till 1985 and no explanations are provided. The assumed causative agent is the ‘normality’ of the non-disabled subjects. Bharadwaj (1995) attempted to differentiate the basic personality traits and orientation of handicapped and non-handicapped children. Cattell's Children Personality Questionnaire (CPQ) was administered to a sample of 450 children (8 to 14 years). A random sample was selected from the blind, cerebral palsy, and non-handicapped groups. Results indicated that the difference between handicapped and non-handicapped children was only of degree. The children affected with cerebral palsy required greater facilities for the proper development of their personality, with blind children manifesting more behavioural disharmony. Aminabhavi (1996) examined the adjustment ability of 30 physically disabled (mean age 21.4 years), and 30 physically abled (mean age 22.8 years), with the Mysore Personality Inventory. Findings indicate that the physically disabled students exhibited a lower level of adjustment in the areas of emotion, mood, criminality, and leadership, but not in aspects related to family, society and reality. Disability thus causes stress only in the conceptualization of self.
The prevalence of the individual tragedy model is reflected in various studies such as Jayawant and Pathak (1995), who indicate that social integration of deaf children is affected because of their inability to tolerate frustration. The suggestions are to help children to develop a positive self-image by accepting their disability. They suggest,
The responses to frustrations given by the children make a low profile, suggesting their non-acceptance of their own obstacle, the deafness…. On the basis of these observations it may be said that the children under study, though well integrated educationally seem to be not integrated socially. This may be due to their inferior self image (p. 27).
The onus ultimately is on the children. However, they do entertain the hypothesis that social factors might be responsible as they go on to say, ‘the surrounding society, at least some section of it must help him to do so by extending a helping hand’(ibid p. 28). While it has an overtone of charity, the individual alone cannot be held responsible.
Bissa et al. (1993) found no significant differences between blind and normal adolescents on the six dimensions of self-concept. Very few studies have taken up the issues of body image from the perspective of the disabled. Dharitri and Murthy (1992) compared body image disturbance among hearing impaired and normal children using Draw-A-Person test. The participants were 317 children who had congenital or pre-lingual hearing impairment with severe, profound, or moderate degree of hearing loss, and who attended either a special or a regular school and were in three age groups (5.5 to 7.5 years, 7.5 to 9.5 years, and 9.5 to 11.5 years). Their performance was compared with that of 90 children with normal hearing. Group differences between hearing impaired and normal children were reported to be significant on some of the body image indices. Once again, the criterion of group selection poses a problem. Is it possible to attribute normality because of a non-disabled body?
Das (1996) examined the personality traits of institutionalized and non-institutionalized mentally retarded children (8 to 12 years) with CPQ. Mentally retarded children were found to be less reserved, emotionally unstable, impatient, submissive, sober, undependable, shy, tender-minded, obstructive, shrewd, placid, careless, and tense. The non-institutionalized girls were more reserved than institutionalized girls. In general, mentally retarded girls were more careless than mentally retarded boys. The specific role of institutionalization has yet to be studied in detail.
Some researchers have made comparisons between the different disability groups with the assumption that disabilities need to be understood not as generic but as having a distinctive pattern. This approach seems to be challenging the ‘universalized’ concept of a disabled person. While it is gratifying to note this sensitivity, the studies do not deal with the critical issues that arise when attempts are made to homogenize the disabled lives. Satapathy and Singhal (2000) found that differences between visually impaired students (13 to 21 years) were less stressed, had higher self-esteem, higher level of adjustment, better academic performance, and exhibited lesser behaviour problems than the hearing impaired. In a similar vein, Reddy (1997) mapped the personality correlates of coping behaviour among physically handicapped students (N = 960) from three different categories—visually/orthopaedically handicapped; hearing impaired; and speech impaired. While significant differences were seen with respect to personality factors, the handicapped students manifested the greatest number of problems both in coping and in negative personality tendencies such as, insecurity/loneliness, depression, feelings of inferiority, and emotional instability. Loneliness, depression, guilt-proneness, and emotional instability were positively related to maladjustment.
Bharadwaj (1997) compared the needs for achievement in relation to depth of feeling and sex. The sample comprised of 600 children (200 had cerebral palsy, 200 were congenitally blind, and 200 non-disabled) of both sexes, age range 8 to 14 years. The results on the Emotional Competencies Scale and Tripathi's Personal Preference Schedule revealed that adequate depth of feeling promoted the need for achievement in general and particularly among non-handicapped boys. Disabled children had greater need for achievement than their non-handicapped counterparts did. In a subsequent study, Bharadwaj (1999) found that the groups did not differ in need for differences, autonomy, affiliation, abasement, nurturance, endurance, and aggression. Normal children had greater need for exhibition and heterosexuality compared to the other groups. The congenitally blind had greater need for achievements and intraception, while the cerebral palsied had more need for change and achievement than normal children. Similarly, Agarwal and Sharma (1998) studied deaf and dumb children, studying in Grades 1 to 10. Using a problem inventory, observation, and interview with the parents and teachers, it was found that most of the children manifested behaviour problems such as, abusive language, lack of respect for elders, destructiveness, egoism, jealousy, stubbornness, and taking others’ belongings without permission. The reflection on how these characteristics are specifically related to disability is missing. What is overlooked in these studies is the explanation of the extent to which psychological implications have impact on the sociological factors such as family acceptance and social integration. Two studies (Kumar et al., 1994–1995b) have compared the adjustment and personality characteristics, and adjustment. The first study indicated significant differences in the adjustment patterns of handicapped persons compared to their normal counterparts. These differences could be attributed to the feelings of isolation, differentiation, and negligence experienced by the handicapped that interfered with their adjustment in society. Normal people manifested a high degree of extroversion as compared to the handicapped people. The latter displayed more neurotic and psychotic symptoms compared to their normal counterparts. Jyothi and Reddy (1996) found that the hearing impaired children had less positive self-concept compared to normal people but they exhibited a higher quality of adjustment in the areas of health, emotionality, and gender identity. Dheer (1993) compared the anxiety level of speech-defective and hard-of-hearing students matched of sex, age, economic status, health and educational qualifications. Results reveal that speech-defective and hard-of-hearing students did not differ in their anxiety level while both groups manifested significantly higher level of anxiety compared to normal students. Kothari (1994) related disability to the moral judgement and achievement motivation. Results indicated a higher level of achievement motivation and moral judgement in normal, compared to blind students. According to Nehra et al. (1997), hearing loss does affect social, vocational, personal, and cognitive functioning. The results showed an improvement in the Ss’ psychological functioning, depression, anxiety, and subjective well-being after using hearing aids, particularly in the case of those with severe hearing loss.
Sood (1994) examined certain personality variables such as social maturity, self-concept, reasoning ability, and general anxiety of learning disabled (LD) children using the Self-concept Questionnaire, the Vineland Social Maturity Scale, the Sarasal General Anxiety Scale, and Raven's Colored Progressive Matrices. The study indicated that LD children exhibited were more anxious, had less positive self-concept and below-average reasoning ability as compared to their normal counterparts. Social maturity, however, could not differentiate between the two groups. Nanda (1998) highlighted the problems faced by physiologically and psychologically disabled children with respect to education, training, and rehabilitation. While on one hand the suggestion is to evolve effective measures of modification in their educational strategies for better results, the other suggestion is to use specially tailored programmes to eliminate the causes of both biological and psychological disabilities. The latter suggestion can be considered problematic by those who fear that sanctioning research to eliminate disabilities would amount to soft eugenics (Ghai, 2001b).
Psychological processes have been explored in case of autistic people. Kumar (2002) attempts to analyse the concept of self- and inter-subjectivity with reference to autism. According to him, individuals with autism have severe problems in areas like the ‘theory of mind’, symbolization and thematization. Consequently, autism is manifested as an abnormality in acquiring a coherent sense of self and an effective inter-subjective interaction. It is possible that individuals with autism may find it hard to distinguish between their internal (emotional, psychological, and mental) and external (environmental, social and physical) worlds. They may find it difficult to recognize and understand their own experiences and their consequent feelings and emotions. The means of bridging the gap between self and other is impaired. Besides this, autistic people lack joint attention and recognition of the perceptions and knowledge of others and this has devastating consequences for interpersonal relationships and social understanding. While the believers of the social model might have a different view, the study does ponder over the psychological processes.
Identity issues can be understood in terms of acculturation as discussed by Berry (1987). This model can be utilized to understand the identity formation process in the disabled. In particular, this can be illustrated by taking the case of deaf community. Being hearing impaired can be understood in two ways. One represents an affiliation with deaf culture (Deaf), and the other represents a mindset that devalues the state of being hearing impaired (deaf). The representations reflect individual perceptions of a state of being, that makes the person a member of a unique cultural group versus one's deafness as impairment. Those who labelled themselves as ‘deaf’ strongly identified with deaf culture and exhibited a strong sense of pride in their membership within the deaf community. For many years, the possibility of being truly ‘bicultural’ (meaning ability to connect with hearing as well as deaf societies) was rarely entertained, as deaf persons were concerned that incorporating behaviours, attitudes, and values from the dominant hearing culture would in essence lead to being labelled as disabled. This conflict bears a strong resemblance to the linguistic and cultural pressures that immigrating or minority groups have had to face. Most deaf people have hearing family members, employment requirements, and must venture out into the hearing society for daily essentials. There is thus ‘biculturalism’ inherent in this interaction. It does not imply an additive state, that is, to be of two cultures, but in a state of tension. These states of tension emerge as disabled individuals deal with the ‘normal’ community. Thus, for disabled people it is not simply an integration of two cultures (as in bilingualism), but involves the ability to negotiate the tensions between the opposite and often overwhelmingly incongruous beliefs and values between the disabled and non-disabled cultures. Hence, to be seen as bicultural can be perceived as either fraught with danger in terms of the loss of a disabled identity, or as a way to accommodate to new realities.
Empirical investigations are needed to examine the kind of processes involved in identity development. Researchers would be better served, if they can focus on the facets of identity development. While it is not appropriate to suggest that motivation or psychological state is irrelevant to the experience of disability, it is dehumanizing to give primacy to such victim-blaming and value laden approaches. In such a situation, the interpretation of the reported tendencies of disabled people to find faults within themselves (Pandey, 2001) is often understood in isolation and without reference to the societal contributions that create an internalized sense of oppression. There is no interrogation, whatsoever, of how life situations might have contributed to these developments. Vulnerability is seen as a characteristic that separates the disabled from the essentially normal, reifying what Finkelstein (1991) refers to as the ‘social death’ model of disability. What is important here is the recognition, that disability is not so much an inherent quality of individuals, as a consequence of societal failure to meet the needs created by impairment and the negativity associated with it. Phenomena such as poverty also encounter this problem in psychological research. This is evident in Misra and Tripathi's (2004) observations on the interest of psychologists in the study of poverty and deprivation. According to them,
…both types of studies the direction of causal relation is difficult to determine because there is a bidirectional relationship between poverty and the various psychological characteristics observed among the poor. Psychologists find poverty as a concept relatively difficult to manage within their research paradigm. Since poverty covers a broad spectrum and is a heterogeneous type of concept, it defies the relatively simple unilinear and microscopic approach of psychologists (Misra & Tripathi, 2004, p. 121)
Thus, recognition of complexity involved in understanding disability as a social category needs to be acknowledged by the psychologists.
THE ONUS OF CARING: DYNAMICS WITHIN FAMILY
I broke my leg again on the journey back to Bombay. When we went back home with my leg in a cast, Sera wasn't surprised. ‘The holidays are over, I suppose,’ she said. Imagine, needing a holiday from your own child wishing you didn't feel like that, because you love him, and you don't need holidays from someone you love. So the question slides up into your mind—When I said that bit about really loving my son, did I mean it? That was a question Sera fought all her life. And whenever she wasn't too sure of the answer, I could sense it like the crows outside my window could sense a monsoon shower. If there is one thing worse than doubting if you love your kid, its being the kid in question.
(Kanga, 1990, p. 63)
This is an excerpt from Firdaus Kanga's autobiography. He sums up eloquently the mental anguish of a child with a disability and that of the mother who has to live with it. Who suffers more is a pedantic question. But, we do need to understand the dynamics in the context of a family which has to face the devastating reality of having an impaired child. Although the last few years have seen a considerable change in family structures in India, parents still attach to their children countless dreams, fantasies, illusions, and projections into the future. These images assume an altogether different meaning when it comes to a child with a disability. Life takes on a different meaning for them after their impaired child was born or acquired a disability after birth. Negative reactions, lack of adequate measures for diagnosis, lack of facilities for education and rehabilitation—the parents’ troubles know no end. It is a situation completely beyond their control and parents are wholly unprepared for it.
The ordeal begins with the very act of diagnosis. Doctors and allied professionals tend to avoid breaking the news, typically giving the news abruptly or failing to give the parents the true picture of the disability. Presumably, they do this to reduce the stress of the situation, but each such measure serves only to add to parents’ feelings of futility and hopelessness. The insensitivity is evident in the narrative of the traumatized mother of a child with cerebral palsy, who was advised that if she were to stop feeding the child, the child would just collapse. Such experiences impact upon every aspect of their lives and they have to pass through a series of intense emotional states before they can accept the situation. How they cope with these reactions depends on the interpretation they attach to the child's disability. If they think fate or destiny is the cause, then the chances that the parents will provide opportunities for the child's rehabilitation diminish. However, if the parents accept the challenge, they then make an effort putting their heart and soul into the child's welfare. Conversely, the meaning parents attach to such a situation is a result of the definitions they encounter in interactions with others, especially significant others, including their family and friends. Historically in India, Dalal (2002) points out,
Large and extended Indian families provided essential physical, emotional and economic support to its members with disabilities. Being cohesive and stable social units, families provided an identity and a sense of security to its members, irrespective of their physical disabilities. The economic and caste status of the family and its networks, also determined the quality of the well-being of its members with disabilities (p. 21).
Within the context of family studies, impact of cognitive impairment has been studied more often than physical or sensory impairment. Most studies reviewed investigate parental attitudes and adjustment. While there are very few in-depth studies that explain the full array and intensity of parental reactions, the researchers do offer certain ideas for implementation. The family of a disabled child is in a unique situation. It is indeed difficult and painful to adjust to the child's disability. Common reactions include grief, revulsion, protectiveness, anger, shock, guilt, and embarrassment. Since the predominant research is vis-à-vis the cognitively impaired child and her/his family, their reactions are discussed first followed by the studies that assess parental reaction with respect to other disabilities. The most recent study is by Gawali (2003), who examined the impact of psycho-legal interventions on parental involvement in rehabilitation process of the mentally retarded. Says Gawali (2003),
…birth of a handicapped child precipitates major family stress…Because of ignorance and deep rooted faith in unscientific culture and religious traditions most Indian families want to keep their mentally retarded child at home, and very soon they adjust with the circumstances (p. 26).
The underlying assumption here is that institutionalization is a better choice. The sentiments expressed in this argument, pose a very serious question. Are we to assume that implications of scientific developments work for the betterment of the cognitively impaired children? Or, are the researchers aware of the dangers inherent in scientific research, when it undertakes projects such as the human genome? This raises many important questions about the neutrality of science and the context in which we are being ‘scientific’. In the quest for a designer baby who is perfect, can disability selection be allowed? The interrogation of the meaning of ‘unscientific’ needs further clarification. Datta et al. (2002), for instance, investigate the factors that predict perceived burden among the primary caregivers of children with intellectual disability. Results indicate that emotions expressed by the parents/guardians towards a child with intellectual disability, the age of the child and their income predicted a high level of perceived burden among the caregivers.
Similarly, Ray (1996) describes the family of children with mental retardation (MR) as the source of their disability. While recognizing the importance of early diagnosis, intervention and training the social and emotional problems of parents of MR children are highlighted. However in such approaches, not much thought is given to the needs of the parents. Furthermore, parents are often initiated to talk about the misfortunes from the moment of diagnosis and continue to be socialized into a medical viewpoint. It is often forgotten that they too get labelled by societal and environmental boundaries. Thus, the child's impairment is transplanted into the parents, thereby creating disablement by proxy. Even among the parents, it is the mother who often takes over the the sole responsibility of the child. For instance, Tangri and Verma (1992) examined the impact of the presence of a mentally handicapped child on the mother. Mothers of mentally handicapped children reported carrying higher social burden than did those with physically handicaps. Mothers of handicapped girls reported carrying greater burden than did mothers of handicapped boys. In an attempt to comprehend gender, Parvathi et al. (1995) indicate that—(i) compared to females, retarded males belonged to relatively poor economic conditions; (ii) while retarded males received more warmth and greater opportunities for play, females received more stimulation in the form of frequent outings and socialization opportunities; (iii) the parents of retarded males experienced greater disappointment, while the parents of retarded females experienced more distress; and (iv) while the concern shown for the welfare of both groups was the same, the family atmosphere of the retarded males was not as good as that of females. These findings need to be contextualized in terms of the Indian cultural scenario in which males are perceived as ‘lineage capital’ and economic capital. Thus, impairment may undermine the family's capacity for economic survival. In this sense, disabled sons are far more problematic, as the breadwinner is usually male. Consequently, greater attention is generally paid to a son's rehabilitation than to a daughter's (Ghai, 2001b). Systematic and coordinated preventive measures are required to help the parents to re-adjust successfully to problems created by the child's handicap before the adverse impact of the handicap is felt.
Prakash (1996) confirms the differences in attitudes and child-rearing practices of mothers of MR children and those of normal children. However, while such studies recognize the importance of imparting information to mothers before they assume parental responsibility, the causation obviously is attributed to biological anomalies. Tangri and Verma (1993) indicated that birth of a handicapped child, notwithstanding its nature (i.e., physical or mental), marital adjustment in such families is disrupted compared to families of normal children. Parents of physically handicapped children had more favourable attitude towards their management than parents of mentally handicapped children. Venkatesen and Vepuri (1993a) studied parental attitudes of a group of mild MR individuals, who frequently exhibited violent and destructive behaviour followed by rebellious behaviours. Parents attributed the cause of such behaviour to their children's primary condition and not to anomalies in their own parenting skills and/or environmental situations. Parents also appeared to vacillate between extremes of either appeasement and/or excessive use of physical abuse, punctuated with an in-between state of indecisiveness/ignorance about problem behaviours in their MR children. The extent of problem behaviour present in the child is related to the hopelessness in parents (Padencheri & Russell, 2002).
Some other studies, such as those by Ram Gopal and Rao (1994), Rangaswami (1995), report that the negative attitude of the parents is responsible for behavioural disorders in moderately mentally retarded boys and girls. While the studies do suggest that paternal attitudes are significant, the causal direction indicated negates the role of social factors. As parents pass through a series of emotional stages before accepting the change in their family, research has to consider both the given stage and the dynamics of the family. The child, as well as the family has to adapt to the environment through individual effort. If they cannot or do not adapt then they may be labelled as ‘problematic’ or deviants.
Within the context of the parental reactions, Behari (1995) concludes that for MR boys, education and economic class of the mother can be significant variables in determining the child-rearing practices. Annapurana and Bharathi (1998) suggest that the age of the child significantly affected perceptions of fathers about the availability of resources. However, the number of children, type of marriage, family size, the gender and birth order of the mentally handicapped child did not affect the perceptions of the respondents.
That the trend of considering of caregivers as sacrificial lambs to the emotional and physical needs of disabled people seems unchanged as is evident from the same direction followed in early 1990s. Gambhir (1993) for instance, starts with an assumption that, ‘the presence of a child produces a state of shock and affects the life style and quality of the whole family especially the mothers. Many mothers suffer from a fear of guilt or shame on this account’ (p. 11). Factors such as degree of spasticity and IQ of the child, parents’ educational status, family size and income influenced mother's problems. Many of these factors would hold for nondisabled children as well. Self-blame by the mothers themselves as well as by society is true for the physically disabled children as well. Historically one can find folklore that depict the enormous skills of mothers, who would go to any lengths to protect their disabled child. Miles (2002) cites a traditional north Indian folklore ‘Lull the Idiot’. The tale while depicting Lull's rollicking life gives an insight to the recurrent dilemmas of parents whose mentally retarded young son expresses a desire to marry. The story relates that when Lull accidentally kills a village girl while engaging in playful behaviour, his mother's astuteness retrieves the disastrous situation. She transforms Lull's stupidity to his advantage, so much so, that even when he brags about his feat he brings a ridiculous element into the story and is thus not believed.
A study by Dalal and Pande (1999) indicated that there is gender difference in the family group in blaming itself for the disability of their child. Majority of the mothers in the sample (75 per cent) blamed themselves for the child's suffering. According to Dalal and Pande (1999):
This blaming of the self is antithetical to the fatalistic attitude. By blaming themselves for the disability of their ward, these females apparently suffered from guilt, but paradoxically sustained a delayed sense of personal control in the past mis-happening (p. 73).
As mentioned earlier, mother blame has been a recurrent theme in the Indian context (Ghai, 2003). Dalal and his colleagues have studied the attitudes of the family members. They have explored the cultural meanings attached to disability, and take family as an important criterion group (Dalal et al., 2000, 2001). The family members responded to a comprehensive Disability-Attitude-Belief-Behaviour (DABB) Questionnaire. Family (more often than the community) thought that people with disability can do very little and have to be cared for. In general, the responses of family members were more negative, accepting disability in the family as their fate, over which they had little control. Thus, the family focused more on the affective state, attributing the disability more to fate and poverty.
Arora (2000a) indicates that there is no relationship between adjustment patterns and family climate of hearing impaired. Gender stereotyping seems to be operative with the girls exhibiting submissiveness, and boys manifesting aggressive behaviour. From a feminist angle, perhaps the measures used need interrogation. What is significant from the disability viewpoint is that adjustment does not appear to be a direct function of the family. Sahu (2001) used questionnaires and an interview schedule to assess parental attitudes. The results indicated that majority of the parents whose children attended integrated schools were satisfied. However, they complained of the lack of trained teachers and specialized teaching techniques. Majority of them emphasized the need for pre-school training in speech therapy for teachers in integrated schools. Thus parents, who are assured of support in such areas as education, are likely to have favourable attitudes towards their disabled children.
Pal et al. (2002a), found that both boys and girls with epilepsy had significant social deficits, with the traditional gender pattern being followed. It was also observed that boys with epilepsy engaged in limited peer group activities and parents conferred fewer responsibilities on epileptic school-age children and adolescent children compared to control. As the nature and degree of deficits were beyond the constraints imposed by neurological impairment, parental attitudes of overprotection were held responsible for the existing state of affairs. It was concluded that social integration called for active and early promotion among children with epilepsy. Some cross cultural-comparisons have also been reported.
Some studies (Arora & Ghai, 1997; Mangala & Ghai, 2000) have explored the narratives of mothers who have spastic and developmentally disabled daughters. The pain and anguish is obvious. Most mothers painfully reported lack of awareness and understanding in society and agreed that society at large did see them as needing support. Some commented on how their efforts to lead normal lives were hampered by the attitudes of their families. Mothers have the entire responsibility for caring and the commitment is considered ‘natural’ for them. Because ‘excessive value is attached to traditional role and responsibilities, especially in the family context’ (Kapadia, 1999, p. 265), the responsibility for nurturance is thus shifted to women. In the case of disabled daughters, the care relationship gets linked to notions of self sacrifice thereby creating ‘a culture of female sacrifice’ (Papanek, 1990, p. 173). The result is that women assume guilt when they feel that their giving is inadequately selfless, and put the blame squarely upon themselves. The responsibility for needed treatment and for advocacy falls largely upon the mother, whether by design or by default. Instead of credit due to her for what she does for the child and for what the child is able to accomplish, the mother accepts responsibility for what has gone wrong. The research, though sensitive to the extra demands of the caring function, characterizes it as ‘burden’, thus, following the orthodox and conventional way of analysing the locus as lying within a single parent.
Dempsey et al. (2001) indicated that there is a significant relationship between empowerment, enabling support strategies, and demographic variables. Similarly, Stanhope (2002) lists family involvement as a critical factor in the rehabilitation of psychiatric disabilities.
The studies have ignored the fact that the family is a system of interlocking relationships, that impact upon how that family copes with their child and what strengths they can draw upon. It is the family as a whole that is disabled by the unjust society that it finds itself in. Within this experience, two key dimensions are central. First, families with a disabled child face greater chances of material deprivation. Second, they commonly experience a variety of obstacles in accessing the range of information and services that could have had a positive impact on their lives.
Perhaps, it would also be wiser to accept that differences in parental reactions need not stem from the disability alone, as situations are interpreted according to the expectations of the parents from themselves as well as the child. Consequently, adjustment to disability is relative to the parent's economic situation and value system. A. Hussain (1992) indicates that a highly religious orientation correlated positively with acceptance of a blind child, while high social, aesthetic, and economic values correlated with less favourable attitudes. It seems that religion does provide a space within which acceptance of disability is easy. It could also be that an attribution to external factors rationalizes the helplessness experienced by the onset of disability.
Besides parents, some attention has been paid to the siblings of the disabled person (Saxena & Sharma, 2000). The study using the Coppersmith Self-Esteem Inventory, ‘My Sibling and I’ statements and indoor games, reported that the siblings of mentally retarded adolescents had moderately positive self-esteem. Their sense of identity was not negatively influenced by the presence of the disabled brother sister, with male siblings having better self-esteem. The presence of the sibling and future responsibilities were accepted as an inseparable part of their lives. Only in peer relationships was latent shame experienced. Bhan (1995) highlights the strategies parents require to cope with their special child. It is hard to accept the reality, and with increasing stress, behavioural problems tend to increase. Findings reveal that coping resources and strength would be enhanced, if parents maintain as normal a lifestyle as possible, and seek help from special educators, psychologists, and child welfare organizations. The feeling of competence about parenting skill and focus on the positive aspects of the child are also found to be effective strategies. Mohapatra (1995) cautions the dangers inherent in over-protection and under-protection. This, according to her, is instrumental in generating dependence or insecurity in the child and its ultimate alienation from the family. Soni (1994) too argues that the presence of a handicapped child may have an unfavourable effect on the siblings. In her view, the negative effect can lead to development of some personality traits, like patience which would have been unattainable otherwise. Agarwal and Singh (1998) discuss the problems siblings face, and note that parents play a crucial role in inculcating a positive attitude in the children towards their ‘handicapped’ sibling. The authors suggest that siblings of handicapped children need frequent counselling from professionals, adequate care from parents, proper attention from volunteer organizations, the community and society at large. Pal et al. (2002) also indicate that parental adjustment to a child's epilepsy was dependent on the severity of the child's affliction and satisfaction with social support received from friends and family.
While differences are to be expected between parental reactions with respect to the type of physical and mental disability, Kunder and Julius (1996) did not report any significant difference between the anxiety levels of parents of autistic vs. Down's syndrome children. While it is true that parents can provide useful insights into their children's situation, the children's understanding and experience of the world differs from that of their parents. The child's perspective is often not researched, because it is time consuming and access to children is often difficult. Nevertheless, to exclude children from the research process is questionable.
Another issue that has been missed by the researchers is the notion of ‘caring’. Disabled people are perceived as passive recipients of care and not as individuals in their own right, they fight on both ideological and material terrains. The demand is for a right to personhood—a status beyond that of burden—so that absence of desire is deemed an attempt to normalize a pathological body. While attention given to caretakers is important, that given to the ‘cared-for’ is equally significant. While there are debates over the ethics of caring and the notion of equality, a serious note has not been taken of the special conditions in which the disabled, especially girls, are placed. Their focus on care has not included the mothers of disabled daughters. As indicated by Miles (2002),
The care of infants and children with disabilities, and of elderly people with failing vision, hearing and movement abilities, has fallen largely upon the women of the household, as it does down to the present—and women's caring duties are notoriously under-recognised. The vast majority of women have not been able to make any written record of their own activities, while male historians traditionally have taken them for granted (p. 3).
The traditional response expected of women, that is, a total self-abnegation and dedication to caring for a helpless (usually male) disabled person, appears prominently in Bengali folklore, for example, in the ballads collected by Dinesh Chandra Sen (cited in Miles, 2002, p. 3). Yet, this too could be partly a mythical tradition constructed by male (and sometimes blind) bards to reinforce women's subordination. Within the realm of disability, the debates about ethics of caring have to be evaluated differently. The focus of the psychological discourse has to contribute to a realistic appraisal of the dangers in substituting the ethics of caring for ethics of equality, an unheard dream for the caretakers and care receivers marked by disability.
Researchers have documented that stress levels in families are associated with the way society constructs and labels their children, a situation which leads to difficulty in psychological adjustments, social exclusion, marital, and economic difficulties. The need for a serious engagement cannot be overemphasized. However, family relationships in India cannot be depicted solely in the terms of the exigencies involved. Despite the hardships, the family is the agency that provides emotional strength, although emotional bonding may be unexpressed, subterranean, unrealized or unarticulated. The specific emotional expression may change. What is important is that, despite the odds, there is relatedness within the family that sustains the subsistence of a disabled child (Ghai, 2001b). Though there may be a temporary loss of agency, the resilience of close family ties makes it possible to generate the necessary resistance to fight ongoing oppression.
BELIEFS AND ATTITUDES TOWARDS DISABILITY: US AND ‘THEM’
Gove (1980) writes,’ As with other deviants, it is not so much their actual disability that is the key, but rather society's reaction to it, the label so attached renders the individual deviant’ (p. 234). An individual who is labeled and constructed as disabled suffers the often debilitating consequences of the label (Persaud, 2000). The inherent tendency to label and inscribe, and to construct the disabled in India is premised on the dominant cultural ideology that marginalizes, silences, and constructs subjectivities through the cultural interactions. Beliefs about sickness, the behaviours exhibited by sick persons, and the ways in which family and practitioners respond to sick persons, are all aspects of social reality. They are cultural constructions, shaped distinctly in different societies and in different social-structural settings within those societies. An encouraging area that has emerged in the last few years is that of empirical work on attitude change. Dalal and Pande (1999) investigated the cultural beliefs and attitudes of a rural community toward physical disability. Considering that this is a neglected area, this work assumes tremendous significance. The study took a sample of 64 persons, with an equal number of persons from families with a disabled child and from families in which no member was disabled, were interviewed to study their attitudes, perceptions, and practices relating to disability. The Disability Attitude Belief Behaviour (DABB) Survey Questionnaire was used for this purpose. Results revealed that respondents from the community rate physical fitness as a major indicator of health differentiating people with disability from others in terms of, functional impairment. Further, ‘the family members differentiated their own disabled member from the non-disabled in terms of feelings of distress and unhappiness, and surprisingly believed that these members could do nothing to earn their livelihood’ (p. 71). They attributed disability to God's will and held external factors such as, poverty, poor health facilities violence/accidents, as responsible for causing disability. It is interesting that except for God's will all other factors are indeed responsible and do become the bedrock of an oppressive society. Thus, to develop a positive attitude towards disabled people, research needs to document that disabled people can be productive members of the community. The popular slogan of the disability movement ‘nothing for us without us’, conveys that disabled people can and should decide what is good for them. More recently, Dalal (2002) indicated that it is the limited resources and opportunities that become debilitating for the families. The constant struggle for survival and associated helplessness reflects in their negative attitude towards their disabled family members. However, it is this realization that low expectations are actually created by structural conditions such as, poverty, is a pointer towards a need to move away from individual explanations. However, the negative cultural representation becomes a deterrent in creating sensitivity towards the disabled.
Superstition and cultural belief systems can pose an ominous threat to inclusion of the disabled, because under such circumstances it is difficult for any interaction to occur between the ‘normal’ and the disabled. Thus, ascribing the causes of disability to punishment from the gods and evil forces, is an act of submitting to nebulous influences if they are considered as cultural heritage. This kind of attribution leaves a scar on the family and penetrates through to the child. Though these beliefs do not conform to positivistic tradition, they are powerful, and they affect all aspects of human endeavour. It is argued that people constructed with these terms are constantly reminded of their shortcomings, and potential doors are permanently shut to them. The consequence is rejection, exclusion, and failure. It is evident that strict adherence and allegiance to dominant traditions and cultural values that have no empirical basis, can become destructive weapons and tools with which people in India perpetually construct disability.
The narratives of disabled people provide an insight into the attitudinal barriers that they confront. Chib (2002) shares her experiences of how the attitudes of wider society haunted her. She recalls getting both criticism and accolades for her decision to live independently. However, she was interrogated on the whereabouts of her mother, which really annoyed her. To quote her,
Was it because I was on a wheelchair? How anyone could ask a thirty-three old, “where is your Mummy?” Did they think I was an infant? Did they have no other conversation to make with people like me? Or, if they knew I was on my own they asked me, “how do you manage?” I wondered what gave them the right to invade my privacy. Was it my disability? (pp. 63–64).
Chib's anger documents the negative attitudes with which she has lived all her life. She also talks about infantilization as well an attitude that makes a disabled person a super cripple. Her narrative illuminates the social constructions of deficits, flaws, pity and charity. However, the agency to resist these images also is depicted very poignantly.
Mohapatra (1995), a disabled academician and an advocate, says,
Most of them [disabled] lead an isolated and lonely life. For the progress of the nation as a whole, it is essential that this segment [disabled] should also contribute its share in the process of socio-economic development. To achieve this it is imperative that this community should become an integral part of the existing social set-up (p. 19).
Similarly, Karna (2000) points out,
…the persons with disabilities are the poorest of the poor and weakest of the weak who have been socially, educationally and economically disadvantaged; thus having been customarily denied their right to self assertion, identity and development (p. 15).
As Deb et al. (2002) testify,
…sightless children confront various problems in their daily social and family life Consciously or unconsciously parents may behave harshly with them or tend to differentiate between a sightless and a normal child which may adversely affect the normal psychological development of the sightless child (p. 93).
For disabled people, whether they are born with or acquire disability in later life, the real world offers a crash course in living with harsh realities. However, for non-disabled people, there is no such training. The classic theory of Mowrer (1947) provides one explanation to account for the persistence of our society to look the other way when confronted with disability concerns. Since childhood, we are taught that looking at disabled or staring at them should be avoided. This acculturation represents the acquisition of classically conditioned fear or anxiety response that is best managed by avoidance of situations and people in which such fear arises. Hence, people fail to enter into potentially reinforcing interactions that can allow for alleviating this anxiety.
Pal (2002) conducted focus group discussions with six categories of participants—individuals with physical disability, individuals with mental disability, individuals with alcohol/drug-related disability, family members of mentally disabled persons, family members of physically disabled persons and health professionals. Patients with mental and alcohol/drug-related disability were more discriminated against than those with physical disability. Awareness of the existing laws and social programmes was uniformly poor across the these centres. Stigmatization was the major reason for under-utilization of the meager resources available. There was poor awareness of the Disability Act, 1996.
Joshi (2000) has attempted to address disabled children, who are often excluded from the disability discourse. She studied the daily lives of fifteen children studying in pre-school level to class V in three schools, in and around Delhi. The central concern of this paper was to present what disability means from the point of view of the children, considered to be ‘not normal’ by the schools. The study indicates that the organizational arrangements at school structured the experience of disability for children. The difficulties resulted from a lack of attention to detail on the part of adults. It was revealed that children were active in the process of social classification among themselves, although they did take cues from the teacher, who played an important role. Identifying and categorizing each other, based solely on adult-definitions of disability, did not occur. However, some words in the children's conversations revealed prejudices of the world around them. The children had a well-developed set of parameters for classifying each other as ‘good’/‘bad’, as boys/girls and as ‘big’/‘small’. To some extent, friendship patterns and inclusion/exclusion in a group were based on this. Several participated in this situation; ‘normal’ children were spontaneously inclusive in their practices. Children valued good academic performance, and high achievers were sought as friends, if they were ‘good natured’. Many children with disability were popular and shared close relationships with other children. The least sympathetic response was to children with intellectual disability. The study showed that children with special needs were effective in articulating their experiences when provided with the time, space, and medium to do so.
Teacher attitude towards disability has been investigated both in special vs. integrated education. Kamath and Johlat (1992) studied 106 teachers in three types of schools (regular, special, and integrated). They found varying degrees of awareness and acceptance of disabled children among teachers. An awareness of integrated education and its implications is evident, but its acceptance is limited to integrating only those whose disabilities are not too acute as to be not within the instructional skills of the teacher. Most of the teachers, however, expressed readiness and willingness to learn to handle children effectively.
Venkatesan et al. (1995) found positive trends in the overall knowledge and attitudinal valence of primary school teachers towards children with mental retardation, and their willingness to accept them as pupils in their normal educational setting. Jangira and Srinivasan (1991) investigate the attitudes towards disabled children in 59 educational administrators, 48 principals of public schools, 37 special school educators, and 96 general teachers. While all the groups responded positively, special educators were most favourable. None of the subjects felt that inclusion of disabled children lowers the achievement level of ‘normal’ children. Dalal and Pande (1995) have given a number of suggestions to bring about an attitude change in the wider community. Focus group discussions, provision of vocational skills, and involvement of the family members in community-based rehabilitation (CBR) programmes are some of them. Krefting and Krefting (2002) analyse the cycles of impairment, disability, and handicap. Within this cycle, an attempt is made to locate the positive and negative cycles (Figs 2.1 and 2.2).
Figure 2.1: Positive Cycle of Impairment, Disability and Handicap.
Source: Krefting & Krefting, 2002
The first is the positive cycle of impairment and disability. This cycle is the desired ideal. The norm however, is the negative cycle. The status of disabled in all countries will lie somewhere on the continuum that exists between these two cycles. In her review, developed countries will lie somewhere closer to the ideal positive cycle and developing countries will lie somewhere closer to the negative cycle.
Figure 2.2: Negative Cycle of Impairment, Disability and Handicap.
Source: Krefting & Krefting, 2002
The negative cycle in this view is driven into a downward negative cycle by people's negative attitudes. All the stakeholders partake in this scenario. These include formal and non-formal organizations, the negative, social, political, economic, and environmental context and the negative circumstances such as poverty. Further, impairment enters the cycle through external or natural causes such as genetics, disease, ageing, accidents, etc. This experience is exacerbated because of non-availability of services and assistance for disabled persons and attitudinal barriers. The authors further elaborate,
Barriers can create significant problems in the lives of people with disabilities. For example, mentally handicapped girls may be forced out of their homes and onto the street, where they often become the innocent victims of abuse, both physical and sexual (p. 105).
Finally, barriers often result in the isolation and marginalization of disabled people.
It needs to be pointed out that that society's attitudes and perspectives towards disabled people have always been complex and are often catalysed by the prevailing culture, religion, government, and economic conditions. However, as disabled people engage with society, researchers would need to take note of the necessity of deconstructing the negative images associated with disability.
Sex differences in psychological research are more a matter of perfunctory inclusion and an easy way of having an additional component in the research designs, rather than a matter of serious concern with the role of sex/gender in the development of human behaviour. Consequently, disabled women have to fight both male centricism as well as hegemonies of normality. While it is true that the specific issues for disabled women may vary from those of non-disabled women, the reality of womanhood, which includes the usual experiences and fears of a patriarchal society, are bound to be similar. However, with a body that does not ‘measure up’ to societal norms, the situation becomes precariously unbalanced. Their neglect in psychological research is not surprising. Their concerns are conspicuous by their absence, as is clearly evident in the comprehensive survey (Bharat, 2001) conducted on gender. What has probably been touched is the aspect of burden, and consequent blaming of the mother for the child's disability.
Notwithstanding the historical neglect, there is some recent work done at the interface of disability and gender. Many disabled women pointed to the marginalization and neglect (Ghai, 2002b, 2003; Kamra, 1996; Mohit, 1996). According to Census 2001, there are 93.01 lakh women with disabilities, which constitutes 42.46 per cent of total disabled population. Though not many empirical studies could be located, some pointers such as, book chapters are there. For example, Raje et al. (2003) studied nine disabled women in the city of Bangalore. The women aged 17 to 29 were undergoing training to set up mobility aids workshops in Bangalore. The study inquired about the changes in their personal, social, and professional development as a consequence of training and independent living experiences. The impact of these experiences on family relationships and social awareness among the women themselves was studied. Using semi-structured interviews; the study indicated that in the absence of accurate information, myths and misconceptions about disabled women exist among themselves, their families, and others in the communities. Results revealed that during the two-year period of training, families began to perceive the women as autonomous individuals, whose identities were centred in their work and independent group living. There was a significant change in their self-esteem, which the authors attribute to the training situation. However, as the study points out, the sample was of women, who were looked after by the families, given education, and an independent income. Thus, the parents and the support groups managed to create options for the disabled women's lives. The findings, though very optimistic, are based on a limited sample recipient of the services, but the important question to ask is whether these services are available to all disabled women.
The fact that disabled women lack emotional support is highlighted by Thomas and Thomas (2002) in their survey. In their review of the available literature on women with disabilities in developing countries, they indicate these women often stated that they faced a triple handicap and discrimination due to their disability, gender, and developing context. The authors indicate that, the families of disabled women tend to be over-protective about them as they are apprehensive about the possibilities of exploitation. However, these anxieties are transformed into barriers thereby stifling the disabled women. The authors thus conclude,
Many women with disabilities remain confined to their parental homes, being unable to play the roles traditionally expected of women in society. This can lead to isolation, loneliness, and low self-esteem in women with disabilities. Families in traditional societies are generally supportive in terms of providing physical assistance to their disabled women, but often fail in providing emotional support which is a more complex issue (p. 30).
Ghosh (2003) carried out a survey and assessment of services available for the treatment and training of disabled girls in Kolkata and the areas around. On the basis of questionnaires filled by 22 organizations, and narratives of both parents and disabled girls, Ghosh concludes that gender discrimination worsens the situation of disabled girls. Many of the narratives speak of negative self-images, dejection with families, and inner distress. Though methodologically weak, the study makes a strong plea for a change in the situation of disabled women. Then there are works that are not built on extensive empirical research, but they do raise some significant questions. Bhambani (2003) has analysed the representation of disabled women in Hindi films and concludes that negative images dominate. According to her,
…disability in a majority of films is either ridiculed or made fun of in comedies or is pitied and patronized. The disabled are shown as vulnerable and at the same time undesirable, which makes their integration in the mainstream world impossible (Bhambani, 2003, p. 83).
The study points out the negative impact that such negative projections can have on the attitudes of society, which in any case portray disabled women as burdens. In view of the distress experienced, the role of psychological interventions cannot be overemphasized. Research for evolving such interventions can be extremely useful, but it has to challenge its definition of a disability as a deficient and dependent category. In this context, Limaye (2003) raises a very pertinent, but often invisible, concern with respect to the issues of sexuality and women with sensory disabilities. As disabled women are assumed to be asexual, the efforts to explore this complex area definitely need to be encouraged. The urgent need to examine the disabled women's experiences was indicated by Fine and Asch (1988). In fact, their work underscored the danger inherent in the application of the feminist critique of patriarchy to disabled women's experiences. They realized that it would not offer an adequate account of the disabled women's oppressions. According to them,
Women with disabilities have not been “trapped” by many of the social expectations feminists have challenged. They have not been forced to get married or to subordinate paid work or childbearing or housekeeping. Instead, they have been warned by parents that men only “take advantage”; they have been sterilized by force or by “choice”, rejected by disabled and non-disabled heterosexual and lesbian partners, abandoned by spouses after onset of disability and thwarted when they seek to mother (Fine & Asch, 1988, p. 29).
In reality this ‘freedom’ signified the loss of the traditional roles that offered living space to the women marked as disabled. The constant privileging of the ‘normal’ women worsened the situation of the disabled women. The intimidation of a hegemony, that worships physical and mental perfection, has a definite impact on the resistance they can put against the recurrent marginalization. To think of viable prepositions in such a context is not easy. Despite the swift social, cultural, and economic changes, and a drive towards a globalized society, women are still defined in terms of their connectedness with the traditional social roles. Right through her life, a woman is largely defined by her capacity as a daughter, wife, or a mother. The position she holds outside the home is not considered as her primary role. However, the disabled woman is not considered ‘marriageable’ because her disability is seen as an ‘imperfection’ and there is a fear that her disability could be passed on to her children. Her ability to completely look after the home and family also remains uncertain. While, universally, the incidence of marriage for disabled women is lower than that for disabled men, it grows worse in cultures where traditional roles are highly valued. In a similar vein, whereas specific cultural taboos may vary, the universal reality is that disability and motherhood are not perceived as complementary. The denial of traditional roles thus, adds to a disabled woman's experience of vulnerability. The uncertainty about this role stems from their assumed physical capacities to carry pregnancies. If disabled women do manage to be reproductive, there are grave doubts about their competency as mothers. The emotional strength that they can provide the children is inconsequential, as the stereotypical image of disabled women is that of dependency. That disabled women can be caretakers too, is often missed in the dialogue of care. This reviewer could locate only one published study that looks at the disabled as parents. Mishra and Sharma (1995) examined the processes involved in the care of sighted infants (2 to 24 months) by blind parents and assesses the language, cognitive, and social competencies of the infants. Data was collected using three standard tests, and through detailed observations and interviews. Results revealed that blind parents could carry out infant care activities using their tactile and auditory senses in place of vision. However, blindness did pose difficulties for them in communicating about external events, following the line of visual regard of infants and in monitoring their activities. The infants’ social and cognitive competence were generally in the normal range. Since communication was largely through touch, the infants lagged behind their age norms in the area of expressive language. The authors suggested that the blind parents be provided with Braille material at the stages of human development, and other such materials for increasing their level of awareness about their infants’ competencies.
Women who are considered intellectually disabled, have to very frequently encounter the severest form of oppression in the form of forced sterilization. Without their consent or even their knowledge, their predicament is provided with an ‘effortless’, and realistic solution. It ‘relaxes’ the disabled woman from managing menstrual hygiene, pregnancy, or the ‘risk’ of bearing a disabled child. Ubiquitously, it is argued that sterilization protects a woman from sexual abuse. Though, it is predominantly common for women who are intellectually different, many women with physical and sensory disablement are made to undergo these inhumane treatments. This is quite paradoxical, as the popular image of disabled women portrays them as asexual. This contradiction places them in an extremely perilous situation.
Disabled women, especially those who are severely disabled and fully dependent on others for their day to day life activities, have to contend with caregivers, who objectify disabled women with complete disregard for their feelings or their right to decide on matters concerning them. This is one area in which research with a psychological sensibility can contribute significantly. While it is crucial to attack the societal arrangements that do not provide security and support to the women, the inner distress has to be addressed in a meaningful way so that the ‘agency’ can be kept alive.
The difficulties that disabled women experience are rooted in the meaning that impairment has for non-disabled people. If the difference is recognized as deviance, their internal strength and resistance suffer. As Nancy Mairs (1996) says, ‘To know that one arouses dismay and fear and pity simply sickens the spirit of anyone, whether sound of limb and mind or not’ (p. 103). The right to self-definition and evolving a worldview is a fundamental political right, that disabled women do not have. As disabled women confronting recurrent exclusion, they are deprived of the right to have expertise regarding their lives. Thus, the fight in which disabled women are involved is not simply a struggle to assert an identity, but it is a fight to assert a difference and to account for the injustices done to women that have not found expression in the language of feminism.
Notwithstanding this direct onslaught, to which there is always protest, there is another issue that disabled women have to contend with. This surfaces when their life situations are used as a metaphor to highlight the issues and concerns of non-disabled women. The genesis of this metaphor (abla) probably lies in the fact that the socio-cultural meanings ascribed to female bodies, and those assigned to disabled bodies, are quite similar. Excluded from full participation in public and economic spheres, both are conceived in opposition to a norm that is assumed to possess natural superiority. Such comparisons can be both emancipatory, as well as oppressive. If the objective of invoking such comparisons is to understand different people's lived experience and grasp their legitimacy, the potential is immense. However, if the underlying realities of the categories serve only at a metaphorical level, it can lead to a total erasure of the category, that is being invoked. The consequent effect is that whereas one category gets ‘valorized’ the other is very often ‘suppressed’ in the process. Consequently, when non-disabled women are portrayed as those experiencing social disability, the strategic advantage of the metaphor is lost.
Ghai (2003) has examined the issues of disabled women. She challenges the common ground of sisterhood, long held as feminism's ideal. Her endeavour has been to locate disabled women in feminist discourse. It is pointed out, that both identities are similar in that, neither impairment nor sex is problematic or difficult. They are constructed as problems, when the social context that is designed to be unwelcoming to those biological characteristics is not ‘visualized’. So, if the reality of disabled women's lives is to be comprehended, the negativity associated with both sex and impairment needs to be addressed. It is the interaction of the negativities that creates ‘dual oppression’ for disabled women. The need to locate these issues in feminist and psychological perspectives is emphasized.
There have been quite a few studies that have sought to investigate cognitive processes. A wide gamut of processes, including creativity, memory, and language has been investigated. In a comparison of the creative potential of congenitally visually impaired (CVI) and adventitiously visually impaired (AVI) children, Arora (2000b) found no gender differences. The CVI group had better scores on flexibility and originality. Asha (1997) compares the level of creativity of hearing impaired and normal children, with the latter emerging as more creative. Though the groups did not differ in ideational fluency, normal children were better in flexibility and originality. The findings that normal children perform better on tests such as Baquer Mehdi's Verbal Test of Creative Thinking have been verified by Pattanaik (1997).
Impact of hearing impairment has been studied with respect to memory (Moorjani & Jacob, 2002); spatial ability (Sharmista, 2001); reading ability (Sahu, 1993); Communicational and interactional lag (Vashistha & Vasantha, 1994); achievement at the end of primary cycle (Paranjpe, 1996); and concept formation ability (Jain & Kureshi, 1992). Some studies and, in general, these studies affirm that deficits are there, though interventional possibilities are indicated. One reason given by Kumar and Sharma (1993), and Ittyerah and Sharma (1997), though on different tasks, suggests that children with impaired hearing differed from those with normal hearing in tasks that were influenced by language processes and motor ability. Learning disability (LD) also has been the focus of attention, though no discourse regarding its conceptualization is evident. Patnaik (2002) reports deficiency in selective attention in LD children as compared to normal children. Interventional possibilities are explored by Prasad (1996), who suggests the use of the ‘stop’ strategy (stop before you contact, think about the nature of the task, organize the steps and proceed with the steps) for LD children. Similarly, Rana et al. (1996) have studied the impact of recall conditions and modes of instruction on memory performance of LD children and found them deficient. In the area of dyslexia, Gupta and Garg (1996) found that dyslexics in comparison to their age-matched normal children have difficulties in integrating visual and phonological information.
In the area of visual impairment, focus has been on specific areas such as the difference between touch and vision (Ittyerah, 2002), hand skill and hand preference (Ittyerah, 1993), associative reaction time (Agarwal & Sethi, 1992), health status (Bharti & Hussain, 1998), vocational opportunity (Shah & Arora, 1992), divergent and convergent thinking (Reddy & Rajguru, 1998), conservation development (Sharma, 1991), and learning aptitudes (Sangeeta 1996).
While it is true that some useful directions have been picked up by the investigators, there is a preoccupation with deficits. Within these discourses, the disabled are largely objectified, as environmentally-vulnerable travellers on a biologically-determined road. Judged against these normative yardsticks, the imperfect bodies of the disabled are inevitably constructed as inferior, as ‘backward’ or ‘developmentally delayed’.
Within the area of intellectual impairments, the landscape of the studies is relatively wide. While some studies have looked at cognitive variables, like effect of stimulus complexity and IQ level on exploratory behaviour (Pati & Kumar, 1996), task attention (Pati et al., 1996c); behaviour problems (Pati et al., 1996a); transfer possibilities (Mohan et al., 2001), cognitive and non-cognitive factors in normal and educable mentally retarded (EMR) adolescents (Mukherjee & Sethi, 1997), and circadian rhythms and immediate recall (Rana et al., 1996). Some investigations have attempted to isolate the factors responsible for intellectual impairments. Venkatesan et al. (1996b) have profiled reported prenatal, natal, and postnatal factors from the records of 1,458 MR cases. Attempted abortion, use of teratogenic drugs, maternal illness/health, and maternal hypertension were the most frequently reported prenatal factors while maternal convulsions, anaemia, and bleeding were less frequently reported. Among the natal factors, the most common were low birth weight, delivery at home, and delivery by caesarean section; and among the postnatal factors, the most common were convulsions followed by high-grade fever. Some indications of the rate of mental retardation as a function of birth order and maternal age are given by Kumar et al. (1995). Mother's age, birth order, and consanguinity also emerge as predictors of intellectual impairment. Using the Nagpur Adaptation of the Vineland Social Maturity Scale, Pati et al. (1996d) along with Pati et al. (1997), concluded that age, and severity of retardation could predict social development. The presence of physical conditions increases the severity of autistic behaviour in mildly and moderately retarded people, as indicated in the study (Kar et al., 1996). Some research studies (Gupta & Jain, 1999; Mishra & Hussen, 1999; Pati et al., 1996b) aim at gathering epidemiological data in their specific constituencies. These investigations, however, have limited relevance, as their contribution to the area of inquiry is quite limited.
Some intervention efforts have also been reported. Parent training in children with attention deficit hyperactivity disorder, ADHD, has been stressed by Basu and Deb (1996). The need to work with families to ensure optimum care and successful family adaptation is emphasized by Girimaji (1993). Stressing the advantages of the home-based family care (HBFC) approach to MR, the study highlights the need to devise and evaluate comprehensive care models involving the family members.
Some specific interventional measures have also been suggested. For instance, Mukhopadhyay and Chakrabartii (1996) indicated that it is worthwhile to use the cognitive modification strategies in comparison to token economies, as the former record greater improvement and less relapse. Bhagat et al. (1991) report on the clinical utility of a recreational learning programme, that brings noticeable change by increasing self-confidence and self-esteem. Goldbart and Mukherjee (2000) have stressed the significance of play as a crucial context for the transmission of skills such as, problem solving, language, and communication, in children with cerebral palsy. Within the developmental field, some attention has been given to infant stimulation programmes (Parikh, 1992), and potential rewards for children (Venkatesan et al., 1996a). Similarly, health-related variables have been indicated. For instance, Dash (1997) showed improvements in physical fitness of the sample, it was due to the six-week training using a well-defined physical education syllabus.
While such studies contribute towards enhancing the knowledge base, most of them fail to articulate in a rational manner the various concerns of the stakeholders who are affected by the ‘expertise’ offered by the professionals. Disabled people's functional capacities have to be placed in a broader social and environmental context, that can incorporate issues such as disabling barriers, availability of aids and assistance, and financial and material factors. Rather than adopting the normalizing and anthologizing perspective, that seems to be characterizing the research that has been documented, psychology and psychologists must accept that while there are many ways of managing impairment, the key problems they encounter are prejudice and discrimination (physical and social barriers). As mentioned earlier, the studies are uniformly rooted in an individual/medical model of disability. With underpinnings of positivist research, the studies are bent on characterizing the disabled as ‘lacking’ and ‘problematic’ leading to approaches that identify, categorize and classify the disabled as ‘defective’. There is a singular lack of a critique and appraisal of the processes resulting in definitions, construction, and ownership of disability by academicians and professionals While in the West many studies have challenged and countered the negative and disabling ‘objective knowledge’ about disabled people produced by the dominant discourse (Barnes, 2003), the Indian research disability lacks in-depth analysis and theoretical orientation. One reason for the failure of studies in encapsulating and reflecting the experiences of disability is that research has been conducted mostly by non-disabled researchers. The location of the researcher thus has constructed the disabled as ‘subjects’ in a paradigm that equates disability with deficit and abnormality. Given the historical understanding of deviance as differing from the norm, and Goffman's (1963) attachment to disability, one must assume that ‘deviation’ implies a set of norms do exist, and that the ‘deviation’ refers to pathology of the body. This view point, however, does not contribute an improvement in the material and psychological conditions under which disabled people live. Since the disciplinary boundaries of psychology have not really constructed the discipline as an agent of social change, research consequently has not sought this engagement except in therapeutic settings.
COPING WITH DISABILITY: CAN THE SERVICE SYSTEMS RESPOND?
As early as in 1991, Cornelius indicated that planning for the disabled child is very important. In the last ten years, many landmark legislations have seen the light of the day. The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act was passed in 1995. This is an important legislation that provides guidelines for education, employment, vocational training, reservation, research and human resource development, creation of barrier-free environment and inclusion, and independent living. This is supplemented with the Rehabilitation Council of India Act 1992, that is responsible for standardizing and monitoring training courses for the rehabilitation professionals, granting recognition to institutions running courses, and maintaining a Central Rehabilitation Register of rehabilitation professionals. The Rehabilitation Council of India (RCI) Act was amended in 2000 to give the RCI the additional responsibility of promoting research in Rehabilitation and Special Education. Another legislation termed as the National Trust Act, 1999, provides for the constitution of a national body for the welfare of people with autism, cerebral palsy, mental retardation, and multiple disabilities. The Act mandates promotion of measures for the care and protection of persons with these disabilities. Specifically, it provides guidelines that can become operative in the event of the death of their parents, procedures for appointment of guardians and trustees for persons in need of such protection, and support to registered organizations to provide need-based services in times of crisis to the families of the disabled. While there have been these legislations, the will to translate them into action is not so clearly evident. The recommendations that are given, do give an indication that there is awareness about the necessity of going beyond the medical definitions, and moving towards an analysis of social and political factors. Patnaik (2000) for instance comments,
Right to rehabilitation is one of the fundamental human rights of disabled. The other immediate and pertinent aspects of human development of disabled include their rights to receive food security, appropriate health care, special and integrated education. Moreover, they should be ensured equal opportunity and social recognition through social and political empowerment. (p. 38)
Das (2000), taking up a detailed analysis of locomotor disability also indicates that,
…a purely welfarist approach is bound to be highly resource intensive given the large numbers involved and is unsustainable in the long run…. The possibility of integration into the mainstream society needs serious consideration (p. 42).
Within the documented research, some effort is there to highlight the Equal Opportunities Act. For instance, Raju (1998) provides a description of the Act but does not critically evaluate the implications. As Pal (2002) says, ‘This act remained a declaration of pious intent rather than a basis for a programme of action’ (p. 36). Shanmugavelayutham (1996) who carries out a critical analysis of the act suggests that, ‘…the success of any social legislation depends on its effective implementation in letter and spirit…. This act would lack effectiveness unless backed by public opinion’ (p. 5). Saini (1995) while looking at the Act says, ‘Not even a tip of the iceberg has been touched. Rural areas are devoid of these services, voluntary agencies must be supported with technical know how and the required funds’ (p. 14). However, the legislations have been instrumental in establishing that—(i) the recognition that persons with disabilities have specific rights; (ii) respect for these and other rights; and (iii) the obligation to do what is necessary to enable persons with disabilities to enjoy the effective exercise of their human rights on an equal footing with others. This is in contrast with the earlier opinions which looked at disability as a purely welfare issue with a charitable orientation (Narayanaswamy, 1995). The ground reality is that constitutional provisions without penal sanctions negate the advantage of enforcement, and render the usefulness of the legislative instrument questionable.
Besides the governmental support, a large NGO sector is involved in the rehabilitation. Thomas and Thomas (2002) indicate that there are over 4,000 NGOs involved in rehabilitation activities. The activities cover health, education, vocational training, and production of assistive devices. While the NGOs do commendable work, it is important that the state continues to be the primary agent for undertaking rehabilitation (Ghai, 2001a).
The Rehabilitation Council of India (RCI) is the apex body that regulates training in the field of rehabilitation of persons with disabilities. Every year, it publishes a list of approved institutions, along with the courses offered. All institutions that wish to conduct rehabilitation training programmes have to apply to the RCI for recognition. There are nearly 200 institutions that have been recognized by the RCI to offer courses in various aspects of disability. Some of the very prestigious institutions such as, the Tata Institute of Social Sciences and SNDT University, are conducting courses in the area of rehabilitation. However, the need of the hour is the inclusion of disability issues in mainstream psychology.
EDUCATION AND EMPLOYMENT: THE EXISTING SCENARIO
For disabled people, the dizzying euphoria of youth translates into a host of identity issues. Lacking control over political and economic agendas, it is hard to imagine how young disabled people can hope to fight the negative identities imposed by ‘disabling’ environments’. In particular, the need to establish adult autonomy, respect, and interdependency through paid employment remains largely unmet. An understanding of the state of employment in India may give the reader an idea of this crisis. The Disability Act 1996, provides for 3 per cent reservation in all categories of jobs in the government sector. Though it was notified more than nine years ago, its adoption and implementation has left much to be desired. A research study conducted by an NGO, ‘National Centre for Promotion of Employment for Disabled People’ (NCPEDP) in collaboration with the National Association of the Blind (NAB) in 1998, indicates that earnings are extremely low, with 47.5 per cent earning less than Rs 1,000 per month. Those in employment rarely find it smooth sailing. Most are routinely replaced with non-disabled workers, on the assumption that disability hampers their competence. The dream of independence through employment is largely unrealized. The data further reveal that the corporate world too is not forthcoming in resolving the problem. In the 1,628 private sector companies that were approached for placements by the NGOs, in the years 1996 to 1998 only 1,157 disabled people found jobs. Only 220 disabled people found jobs in the 804 public sector companies approached in the last 2 years. Within this data specific gender estimates are not available, but the best estimate is that only one-quarter of the total employment opportunities go to women. Another study was done by NCPEDP, the same organization that studied the employment practices of the corporate sector, that included both public and private. The sample comprised of 23 public sector companies, 63 private sector companies, and 14 multinational companies. The study utilized a structured questionnaire, which was couriered to all the 100 companies. The questionnaire sought information on the total number of employees in the company, the number of employees with disabilities (if any), and the type of impairment. Out of 100 companies 70 responded. The results point towards a rather depressing trend in terms of the current employment practices in the corporate sector with regard to people with disabilities. The average percentage of employees with disabilities in the respondent companies was found to be a dismal 0.40 per cent. Percentage of people with locomotor disabilities was found to be the highest among the disabled employees, giving rise to the suspicion that their disability is likely to be minimal/negligible. Percentage of employees with mental impairment was found to be the lowest, confirming the stigma/prejudice that still dictates the employment practices in India. It is indeed very surprising to note the extremely low (almost negligible) percentage of disabled employees in the multinational companies, since most of them are from countries that have rather strict quotas/laws for employing people with disabilities. Thus, globalization's positive impact is not evident in the disability segment. Given the widespread inaccessibility and lack of facilities, those with career aspirations remain frustrated. Schemes for self-employment exist largely on paper, as vocational training often fails to take into account local market demands, resulting in ill-equipped individuals with inadequate skills for the competitive market.
These studies depict the dismal picture in the employment sphere. Within mainstream psychology, some attempts are there to assess the job-related variables. Not many studies could be located with respect to job-related variables. This could be a reflection of the gloomy employment scenario or a limitation of the present review. The studies that have been located indicate that productive roles can be assigned to the disabled workers.
Agrawal and Dhar (1982) used the in-depth interview method to identify the dispositional characteristics of workers with disability. These workers had repressed hostility, greater initiative, and higher self-acceptance than normal workers. Their level of job satisfaction was lower than that of other workers. This study, however, was restricted to a non-random sample of only ten disabled workers.
Manickaraj and Karunanidhi (1992) examined the differences between orthopaedically handicapped (OH) and normal subjects in relation to locus of control (LC), assertiveness, vocational maturity (VM), and vocational preferences (VP) and found differences only on the vocational aspiration level. However, the severity of disability influences vocational maturity and preferences. This study is once again a pointer to the lack of reality testing on the part of the researchers, as almost after two decades of concerted effort to work for the employment of the disabled, the situation is still abysmal. To understand aspirations in isolation from the context where work opportunities are rare, is not advisable.
Sinha and Bhargava (1996) evaluated job satisfaction among orthopaedically impaired employees (third grade) in different offices of north Bihar. Findings reported a higher level of satisfaction for women, though all the employees in the study were satisfied.
There are investigations that examine cognitively impaired people, vis-à-vis their employment potential. Arora (2002) evaluated the constraints on the demand side and the measures needed to augment the demand. His findings indicate that employment of persons with disabilities can be enhanced if effective training courses for vocational instructors, that increase their sensitivity to persons with disabilities, are instituted. The release of grants to NGOs for vocational training, reservation of at least 3 per cent of seats in the training institutes, and a need to undertake vocational training in rural areas are some of the other measures. He further stressed the need to carry out applied research that can help in technology upgradation, improvement in tools, assistive devices, and work environment. The results of the investigation concludes that persons with mild and moderate mental retardation from different schools, showed similar levels of generic skills, work traits, and work aptitude. The results also showed a high relationship between generic skills and aptitude, and between work traits and aptitude. On comparing the relationship between generic skills and aptitude, and between work traits and aptitude, it showed that persons with mental retardation from regular schools have a higher relationship between their generic skills and aptitude than those persons from special schools.
This study illustrates the importance of assessing skills, like generic skills, work traits, and work aptitude, before selecting persons with mental retardation for vocational training. It also highlights the need to integrate children with mental retardation into regular schools because it can help them to learn various skills through modelling. Further, the findings support that orientation programmes conducted for teachers who are working in the integrated schools for persons with mental retardation, are highly beneficial.
Rao et al. (1994) explored employment opportunities for the mentally handicapped in rural areas. The focus areas that should be given attention include screening or intake assessment, job identification, placement, and programme evaluation. Ghai and Sen (1996) were very optimistic about absorption of cognitively impaired people in open employment. In a follow-up study, using both objective and subjective measures, they noted that the critical question is of matching individual strengths with the job requirements.
An interaction between type of disability and contextual variables such as, training, education, accessibility affect employment possibilities. Disability is not an all or none phenomena. Therefore, researchers need to understand the heterogeneity in experience of disability.
With respect to education, Chapter 5 of the Equal Opportunities Act clearly mandates that every child with a disability will have access to free education in an appropriate environment/inclusive setting till he attains the age of eighteen years. In cases of severe disabilities, special schools will be set up in such a way that children with disabilities living in any part of the country have access to such schools. Other factors such as new assistive devices, teaching aids, special teaching materials, or such other items will be provided to give a child with disability equal opportunities in education. Teachers’ training would also feature, so that no disabled child is left out of the educational discourse. In addition, stipulations are there which call upon the appropriate governments to prepare a comprehensive education scheme which shall make provision for transportation facilities to children with disabilities, removal of architectural barriers from schools, colleges or other institutions, imparting vocational and professional training; supply of books, uniforms and other materials, and scholarships to students with disabilities. Realizing the difficulties faced by the disabled students, the Act enjoins restructuring of curriculum for the benefit of children with disabilities, to facilitate students with hearing impairment they need to take only one language as part of their curriculum and suitable modification in the examination system, to eliminate purely mathematical questions for the benefit of blind students and students with low vision. Finally, all educational institutions are supposed to provide an amanuensis to blind students and students with low vision. Though the policy is promising, it is quite evident that it is not really moving towards inclusive education. There are some research studies that have made an attempt to analyse the educational issues of disabled children. The general impression seems to be that nowhere is this victimization more glaring than in matters of education, employment, and physical access. Different terms such as integration, mainstreaming and inclusion have been discussed (Singh, 2003), especially after the UNESCO Salamanca Statement, 1994, written in the spirit of ‘Education For All’. These shifts are very significant, as they depict the movement from a medical-individualistic model towards a social model of disability, that takes the ‘problems’ encountered by the disabled people out of individual, into society, thereby challenging society to stop constructing them as recipients of charity and more as citizens who have a right to a dignified life. The implementation of effective educational programmes to ensure a balanced personality is considered vital (Khan, 1999). Research in psychology has paid some attention to issues linked with education. For instance, Sahu (1995) suggested that formulation of policy should be linked with educational requirements. Satisfactory integration of handicapped and non-handicapped children in the same normal classroom requires modification of the school- and classroom organization, curriculum, teaching strategies, and quality of teachers. Recognizing the need for planning, Reddy (1996) calls for an identification of specific needs of different categories of disabilities such as, mental retardation, speech and hearing impairment, and visual, in planning for their education in special settings. Some research studies indicated that integration does not seem to be working for the hearing impaired students; their peers from a special school obtained higher mathematics achievement scores than those who were directly admitted into general schools. Findings of this nature serve as a cautionary note for an educational practice that calls for integration.
An analytical stance would require that the factors intrinsic to both the schools, special and integrated need to be examined in greater detail. In fact, another area that has been researched upon is about the questions of pedagogy and other educational practices. Some efforts have been made to evaluate the efficacy of integrated, semi-integrated, and residential modes of education in terms of speed and accuracy of Braille reading. Punani (1995) studied visually impaired children (N = 130) exposed to various modes of education. Analysis revealed that residential education was significantly different from semi-integrated and integrated education. The integrated mode was least effective in terms of speed and accuracy of Braille reading. A later work by Punani (1996), highlights the complexity of evaluating integrated education in terms of cost of education, extent of integration and participation of community, legislative support, and quality of teachers, curriculum constraints, and administrative convenience. These are the issues that have been the concern of the educationists who have been involved in the education of the disabled. While some of the studies cited in the previous section can contribute to educational pedagogy, carefully planned empirical work is scanty.
The positive trend can be maintained if greater responsibilities are assumed by both regular and special teachers for providing quality education to visually impaired children (Julka, 1998). In this context, Kumar (2000) emphasizes the significance of having generalist type of special educators, who have had training in identification, intervention, and education of different categories of exceptional children, such as, the physically disabled, mentally retarded learning disabled, and visually impaired. Similar concerns are expressed by Sen et al. (1995) in the context of adult learners. It is true that factors such as the rationale of integrated education, models of implementation, and its cost effectiveness with reference to special schooling need to be understood. The success of integration depends on factors such as, attitudes towards disability, willingness to engage difference, and a recognition that support services are extremely critical. Another factor stressed by some researchers such as Pati (1996), is manpower planning and development in the field of disability.
As the general tendency is to borrow Western models, Kalyanpur (1996) has warned of the dangers inherent in the transfer of Western special education technology to India. According to him, culturally responsive alternatives are essential. While a full review of education is beyond the present scope, what is important is that psychology as a discipline should be able to contribute towards a greater understanding of the needs as well as the focus an attitudinal change that is required.
A change in paradigm is called for by Venkateswearlu and Shah (2001), who argue for a rejection of the medical model of treating LDs. The need for systematic educational planning that involves analysis of student's abilities and curriculum, as well as the environmental conditions is deemed critical. Similarly, Pal (2002) provides an analysis of the development and trends from different perspectives for understanding the problems of the disabled. While agreeing that there have been shifts in paradigms, the unidirectional approach of schools, however, prevents the disabled children optimize the development of their latent potentials. Pal (2002) considers the psychological approach is too narrow as it attempts to assess a person through the use of clinical diagnostic criteria like ‘standardized measures’, in quantifying the problems, categorizing and labelling children, and arriving at some solution. Thus, says Pal (2002),
Psychology reduces disability to an individual inability and pathology far removed from the social context of the disabled and by concentrating merely on diagnosis, treatment and prescriptions evaluation and conclusion (p. 33)
A policy can implicitly exclude certain beneficiaries by choosing to remain silent, non-specific, or ambivalent about their inclusion (Alur, 1998). It is unfortunate that the Government of India's provision for ‘all needy children’ does not include the children with disabilities. The word ‘inclusion’ has its specific meaning when it is used to refer to an environment in which disabled children are welcomed and are enabled to participate in programmes alongside typically developing peers. In the context of education, early childhood care is extremely important. An inclusive society is one that provides ‘QOL chances’ (Sen, 2000; Singh, 2003); therefore, all goals and objectives of early childhood care and education can be seen as linked to the goal of equity for all young children. In spite of India launching Sarva Shikhsa Abhiyan, and proclaiming intent to achieve ‘Education for All by the year 2010’, a staggering 95 per cent of young disabled children remain without access to services and opportunities for education.
Notwithstanding ‘casual integration’ (Miles, 1986) of disabled children into regular service provisions in remote pockets of the country, a systemic bias in India, creates impediments preventing inclusion of children with disabilities. This systemic bias comes through institutionalized discrimination where government programmes do not include children with disabilities even for health and nutrition programmes (Alur, 1998). Studies have revealed that disabled children remain hidden and forgotten as a result of the stigmatizing attitude towards disability, negative value disposition of the community, the utter failure of the present day educational system, the lack of infrastructure, and teacher inadequacy to handle diverse needs of children along with a lack of coherent policy to make early intervention effective (Jangira, 1995). A study conducted by the NCPEDP and AIFO (2004) focuses on the enrolment of disabled children in India's educational institutions. The results indicate that only a fraction of the disabled gain admission into schools and colleges across the country. The 119 universities that responded to the survey reported the enrolment of only 1,635 disabled students. Likewise, only 679 disabled students were admitted to the 96 colleges across India that participated in the survey. The results clearly show that the disabled have no place in education in India. These findings were backed by the fact that many prestigious universities, like Delhi University and the All India Institute of Medical Sciences, did not even care to respond. The survey also reveals that schools display greater bias towards the disabled than do colleges. Only 382 students with disabilities were enrolled in the 89 schools that responded; about 18 of them cited the existence of special schools for disabled children as a reason for not admitting them to regular schools. However, the validity of the study is somewhat restricted as it uses a postal survey. What does become clear is that none of the steps suggested in the policy have been implemented. The difficulties of disabled children are rooted in their inability to control the personal and environmental factors, thereby delimiting their potential in everyday life (p. 31). In this context, coping with disability becomes a Herculean task. A number of researchers who have been investigating are associated with successful coping. Anima Sen (1995a) for instance, pointed out that any concern for the prospects of the handicapped in society has to deal not only with the minimization of the handicapped individual's own specific disabilities but also with the eradication of societal stigma towards the disabled. The emphasis thus, has to be on improving the life standards of the disabled through their full participation and equal status, social integration, and solidarity much before the social aspects started assuming a central role. Billimoria (1993) highlighted the ‘Principles of Normalization’ which is essentially a consequence of the Scandinavian ideology based on the acceptance of the handicapped person in normal life. In this context, the integrationist approach is analysed which stresses the relativity of the handicap that is a product of the individual-environment relationship. Coping with the impact of disability has been seen to be dependent on provision of adequate educational facilities. While a complete review of work done in the arena of education is beyond the scope of this chapter, an attempt is made to incorporate the suggestions that have been emanating. One way of responding to this issue, not only in the area of education, has been through CBR. There are modules of inclusive education provided by the National Council of Educational Research and Training (NCERT). However, the creation of such models, notwithstanding their role as providers of guidelines, is limited because they do not take. The move towards inclusive schooling cannot be successful, if we do not contextualize inclusion in the present educational system. Though, the rhetoric of valuing diversity is popular, real inclusion will require will and determination to value diversity. Inclusion to be effective has to respect diversity not by way of tokenism, but by genuinely attempting to create an environment in which differences are respected. The system reforms have to re-structure services and build environment. However, more importantly a re-ordering of priorities and re-examining of student-teacher lives is essential.
Several researchers, including Reddy (1992), Tilak (1994), Nagaswami (1995), Jena (1996) and Dalal (2001), discuss the community-based approach as the ultimate strategy for rehabilitation of disabled people. While deliberating on role of community in introducing change in the QOL of disabled people living with additional burdens such as, poverty, serious attention has been devoted to service provision strategies like CBR. Iyanar (2001), for instance, considers CBR a very practical suggestion. She focuses on how people with disabilities experience inclusion and exclusion in education in Tamil Nadu, a state in south India. She points out that inclusive education is more than schooling. It refers to a range of strategies within a community or society to ensure that all children have equal access to education. The education will equip them for life as part of that community and will help to develop their potential. She concludes that—(i) Inclusion is not just about location, disabled children need to be receiving an appropriate and relevant education that allows them to develop their potential, (ii) Inclusion should not be seen as a cheap alternative: many resources tied up in segregated, special provisions need to be re-allocated to support main stream provision, (iii) Inclusion also needs to be adequately resourced, (iv) Inclusion is not just about curriculum. The attitude and ethos of the school are vital and should actively combat discrimination and strive to promote an environment which welcomes disabled people.
Despite the note of caution exercised by scholars like Dalal (1998) about the vulnerability of such programmes to local influences, CBR seems to be the only viable approach in a country like India. However, the notion of community is rather complex. Communities are often faction-ridden, with undercurrents of suspicion, mistrust, and personal rivalries. Problems arise with the realization that cultures of dependency have been built up and initiatives to mobilize local resources are viewed with scepticism. Consequently, when a national calamity, like a cyclone, hits, it is often disabled people who are left behind to die, or have to await for the magnanimity of philanthropic endeavours. The restorative work in such a milieu cannot be detached from the broader realities of socio-economic and political development. The task of creating a cohesive community is formidable and the viability of strategies such as, CBR will need to be evaluated in the specific cultural context. The individual model does find reflection in some studies such as, Jena et al. (1994), who maintain that ‘while transplanting the retarded into the community one must also see the preparedness of the inmate to adapt to the community life’ (p. 134). The responsibility is still placed on the disabled person. Ojha et al. (1993) suggest evolving public awareness campaigns for a sustained period of time to identify the mentally retarded and providing CBR to them is extremely relevant. In this context community psychology can really assist in responding to the challenge of marginalization in constructive ways. It attempts to go beyond the individual level, and does not attribute social problems to pathology carried by the victims (see Dalal in the ICSSR review volume). Its emphasis on participatory, action-oriented work holds promise for supporting disabled people by analyzing person-environment interactions and the ways society impacts upon individual and community functioning.
AGENDA FOR EMANCIPATORY RESEARCH
Documented research shows that the quantitative analysis which characterizes much of the research, supplemented with interviewing, has not been able to appraise fully the extent and intricacy of the life conditions of disabled people. One major drawback has been that the experiential reality of disabled people is not given primacy. Experiences of disability are complex, and go beyond the dysfunctional body or mind. A serious questioning of the meaning of the disability has not been undertaken, as it has not been understood as an identity category. As Misra et al. (1999) point out, ‘most of the empirical psychological research maintain a status quo and do not contribute to the emancipation of humanity which is suppressed and subjected to atrocities of various kinds’ (p. 28).
It is only when we understand the nuances of being disabled, that we can appreciate the contextualization of their lives in myriad of economic, political, and cultural factors. The review thus, indicates that several important methodological questions are raised in the context of researching disability. The general critique shows that the present disability research has taken place within a positivistic and essentialist theoretical paradigm, which is oppressive for the disabled people. The social relations between the non-disabled researchers and their subjects are also faced by researchers exploring issues related to women, poverty, caste and the rural-urban divide. The need for developing an ‘emancipatory’ research paradigm is imperative. Attraction towards this kind of research was stimulated by the fact that several disabled people all over the world were beginning to understand disability in terms of the social model as indicated in the previous section. Emancipatory research is about the empowerment of disabled people through the transformation of the material and social relations of research production (Barnes, 2003).
In contrast to traditional beliefs, this approach necessitates the generation and production of meaningful and accessible knowledge about structural components such as the economic, political, cultural, and environmental, which create unliveable conditions for disabled people and their families. Disability is not really a fixed category most clearly signified by the white-cane user or a crutch user. Rather, it denotes a fluid and shifting set of conditions. Disability, like most facets of experience is ambiguous and unstable in meaning, as well as a mixture of truth and fiction. What it is depends on who says what, to whom, when and where. In other words, the power differentials between the professional/expert to patient are very significant in ascribing meaning to disability. Many categories such as muscular dystrophy and myalgic encephalomyelitis are not as fixed as perhaps polio. Although even polio changes its character, as is evident from the development of post-polio syndrome, in young polio survivors as they become older. It is unfortunate that research has not sought a serious engagement with the subtle meanings of these definitions (Ghai, 2003). What is apparent as disability is a matter of the subjective understanding that the researcher has evolved.
Adoption of this framework requires the researchers to help facilitate this process of barriers, which are both physical and psychological. While there have been researches (Venugopal, 2001) that have moved towards qualitative research including phenomenology and ethnography, not many studies have been undertaken. All the same, these efforts do indicate that capturing the voices of the marginalized is very critical. Though said in a different context, Misra and Tripathi (2004) comment,
The passive neutral stance of an objective researcher needs to be replaced by commitment to…, social action and construction. There is a need to move beyond the general (and perhaps more obvious) conclusion that inadequate experiences may have negative effects (p. 191).
Emancipatory research that can be instrumental to empowerment of disabled people perhaps is the key to an awareness that would adequately address the needs of the disabled people with empathy and sensitivity.
SUGGESTIONS FOR FUTURE RESEARCH
Research in any domain begins with the purpose of developing and testing theories that advance knowledge, inform practice and policy, sketch the training, modules and give useful suggestions for future research. These assumptions are based on the idea that fostering excellence in research will have long-lasting effects in society. Within this holistic framework, the present review would like to encourage researchers to acknowledge the dynamic interaction between the person and the environment, to be aware of the participation of the subjects of inquiry, that is, the disabled in the planning, implementation, and evaluation of research activities and intervention strategies. Recognition of a paradigm shift in understanding disability is critical. There is a broad agreement that the ultimate goal of research on disability is to improve the lives of disabled people. The experience of disability has both a subjective component, that is influenced by multiple factors such as individual characteristics, cultural values, social stigmas, attitudes, and other factors that carry the potentiality to enable or disable.
In this era of globalization, challenges are coming from several directions. The growing fields of new reproductive technologies, stem cell research, debates regarding end-of-life decisions are all going to pose significant ethical questions. Psychologists can play a critical role in examining issues of QOL. Key research areas include the ethical decisions regarding extending life, organ transplantation and termination decisions. One very crucial example is the area of pre-natal testing of disabled children. Psychologists can contribute meaningfully in assisting the parents to understand the social and psychological impact of these new scientific advances.
Investigating environmental, personal, and social variables poses unique methodological challenges. The most basic challenge is that ecological variables are less open to experimentation. The demand will be for creative and innovative approaches that can undertake these challenges, as it is clear that while studying disability, it is not desirable to assign individuals to experimental conditions. Analysis of larger units such as hospitals, community settings, family systems and workplaces can really assist in evolving interventional strategies for the disabled.
The realization that disability is embedded within the matrix of class, caste, gender, and rural-urban divide is important for psychologists. Intersections would need to be studied in a more meaningful way, so that the complex inner world of people marginalized in multiple ways can be highlighted. Since psychologists are alive to cultural nuances, they must not overlook the confluence of multiple identities. Another research concern is to understand the phenomenological reality of the disabled people. There is a paucity of psychodynamic work which can provide meaningful insights into the psychological reactions. Very often people internalize the reactions of significant others as well as the wider society in a way that it becomes a self-fulfilling prophecy. This research would be exceedingly beneficial if the researcher is aware and cautious that his/her perspective is not narrowed through the lens of the ‘non-disabled culture’. It would, therefore, be important to understand how the external reality leads to an acute sense of depression, desolation, anxiety, and helplessness. A secondary goal is that this exploration has the potential to empower disabled people to address these issues with their non-disabled peers and serve as tutors in achieving a greater sense of comfort and familiarity in interacting with disabled people. Just as women are more likely to include concerns of diversity, disabled people in professional capacities can bring a different consciousness that can address the concerns of difference and its dignified negotiation.
Since psychology has often researched gender and faced accusations of rendering it as an essential category, a combination of feminist methodologies within the framework of a psychological stance will definitely address the interests and authenticity of the location from where disabled women operate. The principle of making the personal political is extremely relevant for disabled women. However, to reach to the political the personal has to be comprehended first.
One very significant area in which psychology can contribute is in developing a lifespan perspective on disability. Right from the onset of disability in childhood to adulthood, the disabled individual is contending with the physical, emotional, and social issues. How can parents be equipped with knowledge that will empower them to produce and sustain a positive identity in disabled children? Thus, research with a focus on an understanding of the complex interrelationships between parents and their maturing disabled child are important. The attachment patterns and their impact on personality, the changes in adolescence, and transitions into adulthood, are particularly difficult for individuals who are dependent on others for care and support. Separation issues as they impact the psyche of disabled children need to be researched comprehensively.
An awareness of the specific stressors on the caregivers and an understanding of the influence of disability on the developmental processes will be enhanced if developmental psychologists engage with these issues. By guiding the parents of a young child through the important tasks of childhood and adolescence, the psychologists can create the grounds for both the parents and their disabled child to have autonomous yet supportive lives. Significant contributions can be made to the areas of vocational awareness, alternatives to work, and leisure time use, sex education, and preparation for parenthood.
Psychology has generally constructed and viewed disability in the domain of clinical/rehabilitation perspectives. The message that it has conveyed is that most psychologists do not need to be trained and skilled in working with disabled people and their families. It is true that many disabled, particularly those with recent onset of disabilities, may be treated primarily by clinical/rehabilitation experts, majority of disabled people who seek evaluation or psychotherapy might be people who want to live independently and become contributing members of the community. If psychologists are to be of help to this section of society, then they need appropriate training. This training needs to reflect the state of knowledge about disability. The very absence of disabled people in psychology—in textbooks, curricula, and among peers and professionals—is a powerful statement about the marginalization of disabled people. This is instrumental in training students not to notice the absence of disability in psychological research and practice. Thus, psychology should research on evolving syllabi that can counter this absence and contribute positively to lives that are different.
Research being conducted in various arenas of knowledge has to be integrated to address adequately the concerns of disabled people. Many of the disability issues could benefit from sharing of ideas among the various disciplines, the common issues from different perspectives. Interdisciplinary research can assist in improving methodologies for assessing and understanding disability. Disability research demands the broadest possible interaction between psychologists, anthropologists, sociologists, educationists, policy makers, and above all disabled people themselves. The merging of discipline boundaries will play a significant role in gaining an understanding of disability that is not rooted in rehabilitation paradigms.
Last but not least, caution has to be exercised so that research is not misused to harm disabled people. For example, if research were to prove that mothers of visually impaired mothers might not have given the right medicines to their children; this, in some cases, has led to serious repercussions. This information, however, can be used to protest against disabled women becoming mothers. The same inputs can be used to demand for tactile markings on medicines or providing instructions in an audio format. The conclusions drawn from research are vulnerable to individuals and it would serve the research community well to take note of the split between research assignments and socially responsible commitments. A gulf between the research community and the disabled community has to avoid the intra-psychic, the material, and the discursive need to be integrated in order to produce noteworthy research. As Donna Reeve (2006) comments,
Professional responses to disability are not simply about making services accessible to disabled people by putting in a ramp. It is about understanding disability from a cultural, political, social and historical perspective and being aware of the complicated effects of this particular form of social oppression which operates at both conscious and unconscious levels. (pp. 103–104)
Within the purview of this chapter an attempt has been made to underscore the tendency of psychological research to treat disability as an essentialist category, thus implying fundamental differences between the disabled and non-disabled caused by the given impairment. It has been evident that psychologists have searched for a ‘disabled’ personality located in the given individual. The social structures that are responsible for making disability a personal tragedy have not been given much attention. Consequently, the interventional strategies are directed at the individual and not at the societal level. Very few attempts view disability as a social construction. It seems extremely easy to identify a sample of disabled people and compare them with the ‘normal’ subjects, without ever examining the assumptions that endorse ‘normality’. The consequence is that the research agendas have been preoccupied with impairment, vulnerability, and service usage. In this attempt they have not paused and taken cognizance of whether it was fitting to examine the notion of disability within the confines of abnormality. In such a scenario, a change in the ethos that would encourage the social inclusion of the disabled seems elusive. However, the change is imminent if the theoretical and social divide between the disabled and non-disabled is not eliminated. Disabled people serve as undesirable reminders to the able-bodied of their own physical vulnerability and transience. According to this perspective, disabled people symbolize literally, human physical imperfection and become the carriers of the terrors which this imperfection might generate. Consequently, they are either rendered invisible in psychological research or are ‘accurately’ measured for the physical and mental deficits, so that a scientific diagnosis of a specific disability can be ascribed. A significant objection that can be raised is whether all disabled people will benefit from a shift in the paradigm that moves away from the medical definitions. This resistance can only be met by an acknowledgement that there are individual differences between disabled people. They will surely have a shifting relationship not only to each other but to what gets counted as the world of ‘normality’. Thus, some ‘impaired’ people will fight for their rights and desire to participate in the ‘normal’ activities whilst claiming appropriate arrangements that enable them to do so. There might be some, who will demand exemptions. Many, however, will vacillate between the two positions, depending on their specific life situation at the given time. Even those in ‘objectively’ similar conditions may differ amongst themselves in their comprehension of the situation, with some wanting cure and others prioritizing a change in social structures and a termination of discrimination and prejudice. The classic example is that of deaf people who are classified as impaired, but who repudiate the disabled identity on the grounds that they constitute a distinct linguistic and cultural minority. Similarly, there are those whose disabilities are hidden from the gaze of others. Research would really serve disabled people well, if it recognizes these intricacies. Impairments can be a consequence of poverty, pollution, or dangerous substances, ongoing wars, and most importantly a disabling environment. The demand that the causes need to be addressed, therefore, is a matter of social justice rather than medical jurisdiction. It, however, would not be appropriate to expect that people affected by thalidomide should adjust without prohibiting the drug.
Academic research thus needs to make a sincere effort so that it does not reproduce, multiply, and legitimize the marginalization of the disabled people, justifying segregation, eugenics, and denial of civil rights. Research has to be sensitive to the issues of difference and diversity in relation to gender, class, caste, and demography. Efforts have to be more than just creating catalogues of medical conditions, service directories, or guidance notes on the ‘handling’ of people with impairments. This obviously means that the results of the research reach the audience and that academics engage with them. This has been termed ‘committed research’ by Touraine (1985), and described as ‘ethics of struggle’ by Hooks (1994) and needs to become a reality.
Understanding of the psychology of disability would thus require a paradigm shift that has a clear grasp of social reality encapsulating the objective reality that defines a truly scientific stance. The queries that why the category did get identified in the first place and whose interests it has served are critical to the disability discourse in psychology. The review indicates that there is a need to evolve a fresh perspective of understanding the realities of disabled lives. Psychology can make definite contributions in enhancing our knowledge of how disabled people understand, decode, contend with, and prevail over the obstructions. It is important that the psychological reactions are contextualized in terms of the personal reactions and disabling barriers imposed by the society. A meaningful engagement with the complexity of the relationship between impairment and disability would enrich both the psychological discourse as well as reinstate the transformative power of psychology.
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