Investigating the Trajectories of Disability Education in India : From Medicalized view to a Social Model of Disability
Introduction
The current understanding of disability, whether it is physical, intellectual, or learning, is dominated by the western understanding and their universalization of Judeo-Christian ideas of stigma and exclusion. Many of these ideas do not fit the countries like India, where the presence of multi casualties like caste, gender, geography, language, community, etc., complicate its definition and practices around the issue of disability. If these factors are not considered, then countries like India merely become data resources to be exploited by the rich western countries and institutions, which then, as a result, theorize and extrapolate on these datasets.
This article attempts to investigate some of these issues around disabilities, along with its history and treatment since pre-colonial India. A detailed account of postcolonial developments in disability practices is also provided, raising the question of why disability studies have failed to establish themselves as an epistemic frame. The last section will discuss the attempts at decolonizing disability studies in India and other parts of the world and why it is an important development in reframing the issues of disability.
As one of the most populous countries globally, India has around 26.8 million people with disabilities (Census, 2011), though other independent sources have given a higher estimate for the total disabled population in India (Saikia et al., 2016). India has also been a signatory to the United Nations Convention on the Rights of Persons with Disabilities, and hence, obligated to implement policies that provide increased access and opportunities to disabled persons.
Following this convention, India has passed several legislations that affect people with disabilities in India, including the Rights of Persons with Disabilities Act, 2016, the Mental Health Care Act, 2017, the National Trust Act, 1999, and the Rehabilitation Council of India Act, 1992. While these acts ameliorate many problems that disabled persons had traditionally faced in India, disability is still seen negatively in the wider population. Also, there are considerable differences in the treatment of sub-disabilities as 20.3% of people with disabilities in India are with movement disabilities, 18.9% have hearing impairments, and 18.8% have visual impairments (Census, 2011).
Only recently, India started collecting data on mental disability and found that 5.6% of persons with disabilities fall into this category. As it is common in any high-modernist state, datafication and documentation have enormous consequences for the welfare of persons with disabilities. While India has achieved significant achievements in physical disabilities, mental disabilities are still getting neglected though there has been increased awareness around these issues in the last few years.
However, before looking into the current state of disability and its issues in India, it would be worthwhile to see how disability and its meaning have been shaped historically. For a systematic account of disability in India, the paper is divided into three broad sections (in chronological order); disability in pre-colonial India, the society, state, and disability in colonial India; and finally, the status of disability in postcolonial India.
Disability in Pre-colonial India
As India was rooted in a different social milieu and epistemological traditions, the disability, and its meaning differed significantly from universalized Judeo-Christian meanings. The Brahmanic textual traditions that guided and supervised rituals and practices excluded those who inherited some form of disability. A disabled person was also denied inheritance. The Yajnavalkya-smriti, categorized under the Brahmanical texts, compares disabled persons with ‘madmen, idiots, born blinds who are rendered unable to inherit’ (Colebrooke, 1801).
This denial of inheritance is different from Judeo-Christian traditions where a person with disabilities is denied equal status based on ‘sin’ or ‘moral failure’, but inheritance, in this case, is denied because of one’s disability that makes one incapable of performing rituals, hence his/her inability to become the bearer of the task of continuing the traditions. Onc’s disability, as textual traditions argue, also makes one incapable of performing funeral rights for parents, pushing such people effectively to the lower strata of society (Derrett & Duncan, 1968).
The negative attitude towards disability was seen not only in Brahmanical textual traditions but also in the widespread practice of Hindu and Buddhist religions. Their propagation of bad karma and reincarnation concepts promoted the belief that an individual’s past transgressions caused disability. While Buddhism believed that suffering, in the form of disability, was inevitable, Hinduism marked it as related to the evil of the person, which could be cured through performing rituals or good karmas (Mitchell & Snyder, 2006; Garland, 2002; Stiker, 2019).
Here, disability, as a social construct, emerged both as evidence of a culture’s weaknesses and a symbol of a culture’s power to discriminate against disabled persons. These influences continued during the medieval period when it was generally believed that disability was retribution for past sins. With the dominant religion was this period, Islam proposed a similar view.
These cultural notions led to the state of disability being accepted as retribution, and the person who was disabled had to accept his/her fate (Dalal & Pandey, 1999; Ghai, 2003). Though other interpretations of these cultural notions have emerged recently, Dalal’s (2003) understanding is that the recurring narrative of retribution for ‘past karmas’ (actions) is unworthy of remedial treatment. The danger inherent in this view of disability is that it makes an individual obligated for his/her disability and excludes any external factors such as poverty, poor health facilities, violence, accidents, etc., from any consideration.
Though many scholars have pointed out the paradoxical nature of these cultural norms in recent times, while the concept of karma may disallow someone from participating in rituals or daily activities, it also provides the ground for resistance. The retribution of past karmas can be corrected by performing compassion and good karma in the cycle of life.
Individuals who help persons with disabilities are also acknowledged for their excellent karmas, though not many scholars agree with this charitable view of disability as this also allows people to use sorcery, magic, or superstitious rituals to cure ‘disability’. While discussing the colonial and post-colonial approaches that have transformed the way disability is looked at, there are still vestiges of pre-colonial thinking found in many examples.
State, Society, and Disability in Colonial India
With a significant part of India coming under colonial rule by the 19th century, the victorian moralities started making entry into the discourse around disability. Racialized views of other communities made the colonial government view disability and disabled people even more harshly. Under the colonial government, separate institutions for the disabled and ‘mentally unstable’ were created, and children and adults with disabilities were ‘ab(normalized).’ This was in contrast to how disability was seen in India traditionally. The disabled were visible within the family context, with disability being primarily treated as ‘some problem’.
The tendency was not to give a rigid definition to the disability, and it was expected, accepted, and identified within the family environment. The acceptance largely came from the belief that ‘s/he is God’s gift and should be looked after comfortably without giving any responsibilities!’. The well-meaning intention, though, might create ‘learned helplessness’ among the disabled. It did lead to the disabled being safe from any violence or harsh treatment. Disabled were also considered as people whose impairments provided them with some ‘special’ group knowledge; hence they were deemed helpful in many rituals.
The colonial redefinition of disability led to it being seen as a ‘problem’, which exists within the body or mind of a person and signifies defect. With medicalized views becoming popular, the colonial discourses sought to provide ‘cure/fix’ for such ‘defects’, either in the form of putting them into separate facilities or showing downright hostility to disabled persons. The colonial government enabled the racial view of disability to make natives the victims of discriminatory laws. A large number of native children were put in separate institutions.
Colonial, though, should not be taken merely as a phenomenon that has now gone. Its effects can still be seen in the landscape of disability policies, and it still defines how the disability is constructed and lived. In India, many colonial laws governing the disabled populations are still in operation. Many official exercises conducted during the colonial period categorized native Indians based on their height, weight, color, etc., and became another point of discrimination.
In such a scenario, Indians who were disabled were doubly discriminated against. This continued even after India received freedom from British colonial rule. In many pockets, the attitude towards disabled persons is guided by colonial views and its medicalization of individual traits. With the market gaining a foothold in every sphere of life, the colonial view has been transformed into neo-colonized perspectives, characterized by the increasing influence of capitalist policies, globalization, and social conflicts on the rights of disabled persons. Dismantling the colonial structures around disability was the prime task that a post-colonial government performed in India.
Disability in Post-Independence India
In India, the discourse around the issues and concerns of disabled persons is a reasonably recent phenomenon. While activists and scholars have been raising issues regarding the welfare of the disabled since India freed itself from the shackles of colonialism, it was only in 1995 that the first significant legislation related to disability was passed. Before we discuss the act, it would be worthwhile to investigate some of the critical events that led to this progressive act. While India did not provide for a separate section on the rights of disabled persons in its constitution as it was covered under the fundamental rights.
Much progressive legislation that we observe in India is derived from the fundamental rights given to the individuals in the constitution. In the early 1980s, India saw some educational and rehabilitative services launched for disabled persons (Chauhan, 1998: 46). Similarly, 1981 was declared as the International Year of Disabled Persons by the UN, which renewed the focus on disability issues in India. The activities around disability and the rights of disabled persons picked up around the 1990s, and the first significant law, The Persons with Disability Act, was passed in 1995, which made the state obligated towards providing free education to every disabled child till the age of 18.
Table 1. Laws and policies addressing the education of children with disabilities
The Act also provided reservations to persons with disabilities in government jobs and higher educational institutions. The focus also shifted towards legislating affairs governing the lives of persons with Autism, Cerebral Palsy, Mental Retardation, and Multiple Disabilities, and in this respect, an Act called the National Trust Act was passed in 1999. This law created the National Trust, a government body that works with volunteer networks and Disabled People’s Organizations, and forms local-level committees that appoint legal guardians for people with disabilities deemed to need them.
Another important legislation was introduced in 2005 that mandated the inclusion of children and youth in mainstream schools and institutions, doing away with the long-established practice of having separate institutions. Building upon this action plan was the National Policy for Persons with Disabilities and Inclusive Education of the Disabled at Secondary Stage. Implementing these policies led to governments allocating budgets for improving disabled-friendly infrastructure across schools and other institutions. A significant focus was also placed on creating awareness around disability rights and changing people’s attitudes towards disability by running advocacy programs at various levels.
The Right to Education Act, 2010 was another milestone legislation that provided children between the ages of 6 to 14 years not only the right to free and compulsory education but also mandated that the state take all measures to make schools disabled-friendly. Coming into the 21st century, the disability activists and policymakers felt the need to replace the existing laws with The Rights of Persons with Disabilities Act, 2016, which increased the number of recognized disabilities from seven to 21. The new legislation also extended the reserved seats for persons with disabilities in government jobs to 4%, which was previously at 3%. Additionally, this legislation also reserved 5% of total places for persons with disabilities, and every institution of higher education, either fully or partially funded by the government, is now required to implement this rule.
One major shift in the discourse of disability rights has been the renewed focus on mental health care and wellbeing. The long-neglected intellectual and learning disabilities came to be recognized under the rights of persons with psychosocial disabilities and are now protected under the Mental Health Care Act, 2017. To carry forward the objective of these progressive legislations, the government of India created the Rehabilitation Council of India under The Rehabilitation Council of India (RCI) Act, 1992. This body is tasked with overseeing the training of professionals, rehabilitating them, and promoting research in areas critical to disability rights and practices.
A large portion of RCI’s is devoted to standardizing, monitoring, and regulating rehabilitation and special education practices. It undertakes designing curriculum pedagogy and implements them under special education initiatives. However, many scholars and activists have accused RCI of functioning from a rigid definition of disability and not acknowledging the developments that have embraced disability education in the last few years. The most problematic of RCI’s framing of disability is its arbitrary measurement. In most cases, a certificate by a medical professional makes individuals eligible for availing of disability benefits.
From medicalized view to a social model of disability: A paradigmatic shift
The policy discourse around disability in India has increasingly framed it in terms of experience. Disability is no longer located within a person, or it is not the individual body that is the site of disability, but it is an individual’s experience that makes him or her experience disability. Going by this definition, a person who is a wheelchair user only feels disabled when he or she cannot climb stairs and access areas readily available to persons without any disabilities, acknowledging that the expert knowledge is very different from experience knowledge.
Hence, If a mechanism such as an elevator or a ramp is put in place, enabling the individual to access the place, it is considered that the individual no longer experiences a ‘disability’. This redefinition of disability has resulted in terms such as ‘mentally challenged’, ‘visually impaired’, and ‘physically impaired’ replacing the more trite, negative usages such as ‘retarded’, ‘cripple’, or ‘lame’. While Indian writings in the field of rehabilitation came to incorporate these changes in consonance with the international standards, they did not contribute much to the changing of social and cultural perceptions around disability.
Table 2. Key national programs focusing on children with disabilities
However, policymakers and disability activists preferring a social model of disability does not anyway suggest that previous definitions of medicalized disability should be wholly given up. The medicalized notion has helped persons with physical disabilities to live normally and participate productively in daily life, especially those with impairments. The more pertinent question here is how the social model of disability helps the disabled?
The answer to this question lies in how disability is interpreted in this new paradigm. Here, persons with disabilities are not required to adjust to the environment, and disability is seen as a static feature of persons with impairments, which must be accepted and could not (in principle) be changed significantly. Hence, instead of putting the onus on an individual, this definition allows for identifying the social, cultural, and physical barriers that limit the opportunities for full participation in society.
Reimagining inclusive education in India: Future directions of disability research
India is one of those countries with considerable positive government input highly debated in many quarters. Despite having disjunctions between national policies and what happens in practice, there are many state benefits available to children with disabilities in India. Additionally, teachers are aware of these benefits and are put through various training programs to sensitize them about the needs of children with disabilities. However, many questions still need to be answered, and hence, a discussion on the future direction of disability research in India would be pertinent here.
So, what could be the direction of education and disability research in the Indian context? This question becomes significant because many of the current debates around education and disability in the global south are determined by a very northern hegemonic understanding of what disability is and what education should be like. Researchers (e.g., Le Fanu, 2014) whose focused area has been countries like India have noted how disability research continues to rely heavily on guidelines, toolkits, and policy initiatives developed in the Western country context.
Such studies assume the universal applicability (and replicability) of the definition of inclusion and how it needs to be understood without acknowledging the existing realities of given countries (Singal et al., 2009). There are very few studies currently available that provide a nuanced understanding of the complexities and real-life issues of people with disabilities living in the south. It would be pretty worthwhile to reflect on the assumptions expressed in the current research agendas around disability and education. For instance, disability discourses within the current context focus on issues like stigmatization and victimization and are very much driven by the deficit model. These understandings do not even consider the current new evidence, which talks about the complexity and realities and the strengths within existing southern systems.
Hence, there is a real need to rethink the research agenda and develop a very nuanced localized, culturally specific understanding of what disability is and what education is in current systems within the southern context. Also, the simple boundaries between inclusion and special education discussed in the West do not hold for many systems in the global south. This demands solid qualitative research that addresses the cultural complexities and issues around disability in the south, especially in India. There is also a need to make a nuanced, complex understanding of how people with disabilities, children and young people, and their families engage with issues around disability daily, and such research should be conducted in partnership with young people and their families.
The second significant issue is to also reflect on issues to do with education systems and disability debates in education. The research has gone in parallel with mainstream research around educational research in the global south, and there is a solid need to begin to bring those together. More dialogue and alliances with people working in mainstream education are needed if there is an agreement at the fundamental level where both believe that having children with disabilities in mainstream education helps improve the quality of the education system. Disability researchers need to debate quality issues in the global south and engage with researchers in mainstream education, so the exciting alliances and spaces are reconstructed within the broader debate.
There is also a tendency to think about disability very homogeneously. Instead, the attempt should be to investigate how disability impacts different types of impairments and its relationship with the issue of gender, caste, and other social identities. So, more work is needed around the disaggregation of data across identities and how they are connected and influence each other.
The current state of the field focuses on the attitudes of peers and teachers towards disabled students. Now, there is a need to move beyond these issues to the concerns of quality education. Teachers’ struggle in classrooms and respect for their concerns should be given equal weightage. Teachers in schools work with limited resources, with an additional burden of non-teaching duties and a low level of institutional support. More engagement with how teachers negotiate their classrooms when teaching both abled and specially-abled children needs to be more engaged.
Often, these teachers have rudimentary training and primarily act on their own accumulated knowledge and folk pedagogies. Researching these phenomena inside schools would contribute to more effective policymaking when it comes to the issues of disability. Leadership is another area neglected in policy research on disability issues.
In a country like India, a teacher is required to navigate through academic and administrative responsibilities, along with the complexities that emerge when children with disabilities are also part of schools and classrooms. Hence, investigating leadership from a disability as a lens would facilitate and promote school leadership that fosters inclusive education for all at all levels. Suppose leadership is defined and understood as ‘a’a process of providing direction and applying influence’’ (Lumby & Coleman, 2016). In that case, it must involve managing every child’s emotions, thoughts, and actions, irrespective of the status of disability, to decisively influence others towards a preferred direction (Diamond & Spillane, 2016).
Such a perspective provides for the scope of different kinds of school leadership, depending on the context and environment of the school or institution. Defined as such, inclusive school leadership dedicates its efforts toward building community and solidarity among students and ensures the full participation of all learners. This policy framework takes the view that school leadership should be inclusive. Several research studies have identified three main leadership functions that must be performed to provide equal opportunities to all and to run schools effectively (Billingsley, McLeskey & Crockett, 2017; McLeskey & Waldron, 2015; Skoglund & Stäcker, 2016). These primary functions, setting direction, organizational development, and human development, are essential for inclusive school leadership (European Agency, 2018b).
Finally, there is a need to be innovative while posing questions about disability and education. Much of the discourse around disability has been centered around the ‘’why’’ question, and rightly so, but now questions of ‘’how’’ are becoming more critical as disability moves from rhetoric to practice (Singal, 2019). This also demands more south and south dialogue on inclusive education, as learning from similar contexts may provide more insights as ‘’… the real experts of development are those who live the reality of the problems on a day-to-day basis’’ (Denning 2001, 244).
Only by empowering teachers and making school safe for children with disabilities, the four different understandings of inclusive education, as proposed by Göransson & Nilholm (2013), could be fulfilled. These four different understandings are as follows; (a) inclusion as the placement of pupils with disabilities in mainstream classrooms, (b) inclusion as meeting the social/academic needs of pupils with disabilities, © inclusion as meeting the social/academic needs of all pupils and (d) inclusion as a creation of communities.
References
Billingsley, B. S., McLeskey, J., & Crockett, J. B. (2014). Moving toward inclusive and high-achieving schools for students with disabilities.
Chauhan, R. S. (1998). Legislative support for education and economic rehabilitation of persons with disabilities in India. Asia Pacific Disability Rehabilitation Journal, 1(2), 46–52.
Colebrooke, H. T. (1801). A digest of Hindu law, on contracts and successions (Vol. 3). Company’s Press.
Dalal, A. K., & Pande, N. (1999). Cultural beliefs and family care of the children with disability. Psychology and Developing Societies, 11(1), 55–75.
Denning, S. (2001). Knowledge sharing in the North and South. W. Gmelin et al.(eds).
Derrett, J. D. M. (1968). Religion, Law, and the State in India.
Diamond, J. B., & Spillane, J. P. (2016). School leadership and management from a distributed perspective: A 2016 retrospective and prospective. Management in education, 30(4), 147–154.
European Agency for Special Needs and Inclusive Education, 2018b. Supporting Inclusive School Leadership: Literature Review. (E. Óskarsdóttir, V. J. Donnelly and M. Turner Cmuchal, eds.). Odense, Denmark.
Garland-Thomson, R. (2020). Integrating disability, transforming feminist theory. In Feminist Theory Reader (pp. 181–191). Routledge.
Ghai, A. (2003). (Dis) embodied form: Issues of disabled women. Har-Anand Publications.
Göransson, K., & Nilholm, C. (2014). Conceptual diversities and empirical shortcomings — a critical analysis of research on inclusive education. European journal of special needs education, 29(3), 265–280.
INDIA, P. (2011). Census of India 2011 provisional population totals. New Delhi: Office of the Registrar General and Census Commissioner.
Le Fanu, G. (2014). International development, disability, and education: Towards a capabilities-focused discourse and praxis. International Journal of Educational Development, 38, 69–79.
McLeskey, J., & Waldron, N. L. (2015). Effective leadership makes schools truly inclusive. Phi Delta Kappan, 96(5), 68–73.
Mitchell, D., & Snyder, S. (2006). the Materiality of Metaphor. The disability studies reader, 205.
Okoko, J. Lumby, J., & Coleman, M.(2016). Leading for equality: Making schools fairer. London: Sage publications. Pages: 214. ISBN: 1473916291. Canadian Journal of Educational Administration and Policy, 186, 27–30.
Saikia, N., Bora, J. K., Jasilionis, D., & Shkolnikov, V. M. (2016). Disability divides in India: evidence from the 2011 census. PloS one, 11(8), e0159809.
Singal, N., & Muthukrishna, N. (2014). Education, childhood, and disability in countries of the South–Re-positioning the debates. Childhood, 21(3), 293–307.
Singal, N. (2019). Researching Disability and Education: Rigour, Respect, and Responsibility. Education and Disability in the Global South: New Perspectives from Africa and Asia, 41–58.
Skoglund, P., & Stäcker, H. (2016). How can education systems support all learners? Tipping-point leadership focused on cultural change and inclusive capability. In Implementing Inclusive Education: Issues in Bridging the Policy-Practice Gap. Emerald Group Publishing Limited.
Stiker, H. J. (2019). A history of disability. University of Michigan Press.
