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 Table of Contents  
MEDICINE AND SOCIETY
Year : 2021  |  Volume : 2  |  Issue : 1  |  Page : 50-58

Disabled in India… A Charity Model?


Founder Chair, The Spastics Society of India(Now Known as ADAPT – Able Disabled All People Together), India

Date of Submission05-Mar-2021
Date of Acceptance20-Mar-2021
Date of Web Publication25-Apr-2021

Correspondence Address:
Dr. Mithu Alur
Flat 2, Block 4, Brady's Flats, Sorab Bharucha Road, Colaba, Mumbai - 400 005
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/JME.JME_26_21

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How to cite this article:
Alur M. Disabled in India… A Charity Model?. J Med Evid 2021;2:50-8

How to cite this URL:
Alur M. Disabled in India… A Charity Model?. J Med Evid [serial online] 2021 [cited 2022 Aug 15];2:50-8. Available from: http://www.journaljme.org/text.asp?2021/2/1/50/314624


  Introduction Top
This article appears to be a little unusual from the rest of the well-written ones by eminent authors, but it endeavours to combine scientific facts with a human interest focus. My story is really a story of many journeys, with many challenges. (Alur M, 2017). Professionally, I am an Educationist with a disabled daughter called Malini. Here, in this article, I combine my narrative with the issues of Disability in India with my personal story. I also explore how a change was brought about through two inclusive models. I conclude with what is the current orthodoxy and what is the way forward to fill the gaps in India. My first experience with disability was when my daughter, Malini was born. Malini was born in 1966 in the leading nursing home in Kolkata, India, with cerebral palsy (CP). The doctor was a very well-known professor of gynaecology, who allowed labour to continue for over 40 h: later, when the baby was asphyxiated with a prolapsed, umbilical cord around her neck, he was not sure that she would survive; he kept saying 'it was a mistake', 'I should have done a Caesar': just a few minutes of a lack of oxygen caused a life time of damage. My spouse and I were young parents aged aged 24 and 22 years, respectively and we ran from pillar to post in desperation trying to understand what had happened to her… finding nobody who understood her, decided to go to England in search of treatment for Malini. My spouse had just returned from finishing a Tripos in Cambridge, and my sister, Mita (from LSE and who later began the Spastics Society of Northern India) and my brother-in-law, Dr. Samiran Nundy (Registrar at Addenbrooke's Hospital, Cambridge) were working and lived in Cambridge. We thought it best for us to move to Cambridge for a fresh diagnosis and proper treatment. For us, the time in England was key. I met people who treated her and me with great care and sensitivity. Malini was assessed as above average in her intelligence (so much for being called a vegetable!). Their whole approach to her changed our lives… my daughter progressed, and I decided to study more on the subject and did my first course at the Institute of Education in London as a Special Educator. In the late sixties, inclusive education was a far cry, and special schools were still the order of the day. We as students were taken around to a large array of special schools including schools for the delicate! The Second Challenge is the Exclusion from the System, an Institutional Discrimination. A parallel challenge I faced was what faces the disabled population in the country, nearly 80 million people, suffering from massive exclusion… forgotten millions I call them, made invisible through systemic exclusion.[1] I came from one of those privileged highly educated families of Kolkata, where there was a strong combination of British and Indian influence. My parents were staunch nationalists, as many people were during the historic pre-independence and immediate post-independence period. The oft repeated phrase one heard was 'you must serve India' and 'the service must go beyond self' and then about the approach to the service was 'the right should be to work only and not to the fruits.' After my return, a huge shock awaited me. After 6 years, the situation was the same! I was asked by the Health Minister himself, 'What is a spastic? Are you talking about plastics?' 'Why educate them?' An eminent citizen in Mumbai said, 'Why bother Mithu, there are hundreds of normal children needing education.' A Vice Chancellor said the BA is a useless examination! I reflected…. What was happening for other Malinis? What a difference from the cocoon of services in England we had left behind … the love, the care, the kindness and the compassion. It was like being thrown into a turbulent merciless ocean and not knowing how to swim. We were again cast into a situation of despair. I wanted to run back to England, but there was no going back this time.
  Historical Background Top
Historically, in and around 1947, the British Education Office John Sargent, and later in 1966, the Kothari Commission recommended that the education of disabled children must be the responsibility of the Ministry of Education. Governments ignored this and bifurcated the Ministry and put the education of disabled children with the Ministry of Welfare. The objectives of the Ministry of Welfare became to 'rehabilitate' rather than to 'educate'. Disability is a relative term since different cultures define their norms differently. Concepts of disability are therefore situation-bound, contextual and be subjective.[2] Disability can be regarded as taboo: a retribution for the past sins committed, stigmatising a child and cutting across economic boundaries.[3],[4] In such a tradition-bound society like India, stratified by caste, class, religion, rich and poor and male and female, social attitudes can disable a person.[5],[6] The Karmic Theory of Traditional Hindus about the present being a reflection of the past deeds was strongly entrenched. It is a matter of an 'individual responsibility' 'a personal tragedy'. This led to a fatalistic attitude. Their cultural mind set is reflected in the opinions they voiced: 'who can do anything?' 'It's my fate and I have to bear it' 'it's my fault'… which made them voiceless, invisible…. an individual construct of a personal tragedy theory that has been written about by several writers a view publicly accepted. The families' views were shaped over the years. Policy-makers tend to have the same opinion.[7] Due to ill-defined policy objectives in India, due to policy not clarifying or spelling out that 'all' means disabled children as well, disabled have been left out of policies. Implementation strategies for the inclusion of children with special needs therefore had not been worked out, leading to the non-inclusion of disabled children from existing programmes. Government relies on voluntary organisations to deliver services. This only ensures a micro-level coverage. Non-government organisations (NGOs) and their concentration on the delivery of services move the issue away from a rights approach, leading to a disempowerment and depoliticisation of the disabled group. This takes the matter out of the public domain, making it a politically weak group and placing it within a charity framework. Negative attitudes, ignorance and a lack of awareness that prevails towards disability have also contributed to an overall ideological and cultural entrenchment in the subcontinent, contributing to marginalisation. The government's conceptual confusion about rehabilitation rather than education has come in the way of clear policy-making. Their reliance on voluntary organisations to deliver services ensures a micro level coverage (2% coverage so far) and indicates a continuity of thinking that it is a private individual's tragedy not a government's responsibility. Therefore, on a wider level on top government teacher training organisation in which around five million teachers in the country are being trained, do not have a disability component in their syllabi nor do medical doctors or paramedical, except briefly. This massive exclusion from the system has been described as 'institutional discrimination'.[8]
  The Spastics Society Model Top
In 1972, it was in such a milieu that I found myself with my daughter. Then, more empowered, more educated about the condition, finding a dearth of a professional approach to the management of CP and a complete lack of understanding, the first Spastics Society (now called ADAPT, Able Disabled All People Together) was launched in Mumbai. What was different? It had a whole team approach new to India providing a holistic treatment to this chronic condition of CP and professionalism combined with care. Let me explain further. As I had learnt, CP is damage to the infant's brain usually around the time of birth as a result of anoxia or an infant getting jaundice, encephalitis or meningitis. There is diffuse rather than localised damage. The associated manifestations could be movement and speech deficits, hearing and visual defects, intellectual retardation, seizures or epileptic fits and behavioural and psychological problems. There is no fast cure, no quick tonic or panacea. To do justice to the child, a holistic management is critical, combining education, treatment and social and emotional development. For effective long-term management, there has to be a continuum of management which has a longitudinal element of continuity. This is possible in a school setting, together with good home management by the parents. This is best done by a large team of experts consisting of doctors, paramedical staff such as physiotherapists, occupational and speech therapists, special educators, psychologists and social workers, in partnership with parents.
  Interdisciplinary Rapport Top
It has been called an interdisciplinary rapport engaging the team to work cohesively coming to a consensus on common goals. The child is looked at as a child first and then as being disabled. Sometimes, there are invisible barriers between various disciplines. Breaking these walls is essential for the child's growth. The main aim is to normalise life as much as possible by facilitating a range of activities so that the child realises that although she cannot do certain things, there are many other activities that she can engage in.
  Early Diagnosis Top
Early diagnosis is crucial. If CP is not detected and treated early, there is a high risk of the child developing secondary and tertiary disorders. Bearing this in mind, we took care to diagnose the condition as early as 10 days after birth and started working with the mother [Figure 1]. Infant clinics were set up for high-risk babies. For Infant Stimulation, we called in Dr Armida Fernandez (an eminent neonatologist) and Dr Vojta (a German neurologist) taught us the technique of evaluation used to detect if a baby had what was known as 'central coordination disturbance'. This technique, known as a kinesiological examination, assesses seven postural reactions. The child is tested in seven different positions, and on the basis of the responses seen, a developmental age is determined. This enables the therapist to prepare a checklist of the milestones and appropriate programme for the child. Identification and assessment of the child's needs are critical and cannot be done in a single examination, but over a period of time. The evaluation sessions are a means for the rehabilitation team to develop a rapport with the parents and the child and gain their confidence before training them home management and educating them about their child.
Figure 1: Pamela Stretch, British physiotherapist and team

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  Parents as Partners Top
Earlier (and even now), the physical, occupational and speech therapies were specialisations with rigid boundaries, known only to the experts concerned [Figure 2]. Discussion and conversation with parents were non-existent. Often, an aura of professionalisation prevails, and it is not kept in mind that a humane approach is needed. The parent is not told what activity is being carried out and why. The child is more of a 'diagnosis' than anything else, to be discussed among colleagues. A leading doctor treating CP in India said, 'Parents are patients and you cannot share their file with them'. Again, we changed that.
Figure 2: Home management and parent support

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Parents became our partners, our main stakeholders. Under the model of service, each parent is explained, in simple terms, the reason behind a particular therapy/activity. There is much more transparency and accountability. Simple tasks are explained: how to carry and feed the child, the importance of proper seating and posture, self-help skills, how to build on language and communication and how to give social and emotional support, both to the child and the rest of the family. Of course, for a period, each therapist observes the parents performing the exercises to ensure proper handling. This is the key to effective home management. The quality of any organisation depends on the quality of its staff. Training programmes for the management of CP were non-existent. We started training courses for doctors, teachers, therapists, community workers, parents and government officials to build capacity. This helped to create a much-needed cadre of people at the national level. It also helped decentralise services away from Mumbai to other parts of India. This model has been replicated in 20 of the 31 states in India. Extra-curriculum Activities To encourage success in other areas, extra-curricular activities such as music, painting, art and crafts, drama, sports, yoga and PT were introduced for the first time. Focus was placed on those areas, where the child could enjoy and excel, building up on their strengths, rather than falling for their weaknesses. Exhibitions, annual concerts and participatory sports with regular schools helped in the process of demystifying disability, thereby contributing to a growth in the child's self-esteem and confidence. Holistic programmes combining education and treatment, provided through early infant clinics, helped to demystify CP. This kind of treatment, in which doctors, paramedics, special educators, social workers and psychologists worked together with parents, took root and began to show results [Figure 3]. The top-down bottom-up approach, which gave parents a prime position, marked a shift from a tight medical model to a community model.
Figure 3: Mother of Toshan Chatterjee (now in Reliance) pioneered services in Education with Colleen Sanjana our oldest volunteer

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Where there was no school. What is interesting is that in 50% of children with CP, the part of the brain which controls intellectual development is not damaged. A person with CP is described as having 'an intelligent mind in a disobedient body'. Through our own work, we demonstrated that with slight modification in the curriculum framework and through new methods of communication, children with CP can benefit substantially from education. In the area of education, children with a little assistance have been able to appear for school and university board examinations and have come through with flying colours in accountancy, journalism, finance, computing and other disciplines. Over 300 models of employment have been developed. This first model demonstrated a whole team approach new to India providing a holistic treatment to this much misunderstood chronic condition of CP, providing continuity of service from birth to 18 years and more. Above all always providing professionalism combined with care and compassion.
  The Current Thinking on Disability Top
Medical model Today, there has been a shift in the approach to disability... a sea change, which has been initiated by disabled people themselves. In the old model, known as the medical model, persons with disability were looked upon as dysfunctioning and pathologised. Earlier, it was believed that disabled people should be fixed fitted and cured to suit society. In other words, if the individual is 'cured', then these problems will not exist. Social model Today, the Social Model has taken centre stage, as disability rights and independent living movements have gained strength. This model regards disability as a normal aspect of life, not as a deviance. It rejects the notion that persons with disabilities are in some inherent way 'defective'. In the Social Model, a wheelchair user is handicapped by steps and not by his/her inability to walk. The problem is not entirely due to the impairment but also the physical construction of the environment. In this model, it is the external environment that should be modified to suit the individual with disabilities. It is Society that is the problem, the problem is not within internal but out external.
  Universal Design Top
A relatively new term called Universal Design that encourages accessibility to people with disabilities is being used. Universal Design grew out of the recognition by architects that they needed to design the built environment so that it would be usable by all people, regardless of age or ability.
  What Is UDL in Education? Top
UDL is a set of guiding principles used in designing curriculum and lessons from the earliest stages so that the greatest number of students will be able to learn most effectively and deeply. The design process leads to flexible materials and lessons that can be utilised by all students. Fewer changes need to be made at the time of instruction, as the curriculum was already designed to be flexible.[9]
  Inclusive Education Top
Today, inclusive education has taken centre stage. Inclusion is an educational approach and philosophy that provides all students with community membership and greater opportunities for academic and social achievement. Inclusive education aims to include all children facing barriers to learning. Children are not seen as one homogenous mass but individuals with their own levels of functioning at their own pace. Inclusive education is based on the simple idea that every child and family is valued equally and deserves the same opportunities and experiences. It is really at the heart of school reform and means high-quality education. The philosophy behind inclusive education is to promote opportunities for all children to participate, learn and have equal treatment, irrespective of their mental or physical abilities. It is not only about children with disability but it also is about all children any child 'at risk' of failure or 'facing barriers to learning' due to socio-economic background, gender, religion and disability. For a long time, children with disabilities (CWDs) were educated in separate classes or in separate schools. People got used to the idea that special education meant separate education. However, we now know that when children are educated together, positive academic and social outcomes occur for all the children involved. All children benefit from inclusive education. Inclusion is an effort to make sure that diverse learners – those with disabilities, different languages and cultures, different homes and family lives, different interests and ways of learning – are exposed to teaching strategies that reach them as individual learners. Inclusion has been possible in the industrialised countries because the state has taken on the responsibility, and there has been a systemic change because the education system has evolved over a period of time; as awareness has developed, so CWDs have been mainstreamed into the normal system of education.[10],[11],[12],[13]
  National and Asian Resource Centre for Inclusion Model Top
In 1999, we moved away from segregated education to the concept of inclusive education where children with or without disability studied together side by side. 'The National and Asian Resource Centre for Inclusion' (NARCI) was set up in Bombay to change policy on a larger level to address the massive exclusion happening in the country, as well as to demonstrate practice on how to include children with disability into classrooms and the programmes of the government in schools and community. We expanded the term disabled to a broader perspective. First of all, admission policies had to change.

NARCI functioned on three levels micro, mezzo and macro Model I: Inclusion within National and Asian Resource Centre for Inclusion Desegregating special schools
  • Final goal for all students is inclusion into mainstream regular schools
  • Focus on
    1. Socially disadvantaged children
    2. First generation learners
    3. The girl child
    4. Children with all types of disabilities.
Making special schools inclusive To create education for all models, the Social Model and Universal Design were brought in. Model II: The whole community approach Intervention involved strengthening the community and building support with a bottom-up approach. To do this, we looked at all the different layers of people who come into contact with the child. Each can be a barrier and need to be dealt with separately… this process we called a whole community approach. Making community schools inclusive: Model of slum schools
  • Children out of school have now got an access to education in inclusive nurseries in the slums. Disabled children and normal children are learning side by side within our own existing special schools.
Community-based initiatives in the Asia Pacific Region In 2000, we left the frontiers of India and moved into the Asia Pacific Region. An Asia Pacific Course for Master Trainers has been set up. A 3-month certificate course aims to prepare Master Trainers, and management personnel to train others in their various regions to promote inclusive education outside India into the Asia Pacific regions within the context and culture of different regions. The course is concerned with community issues and is firmly rooted in the Social Model of disability rather than an impairment-based medical model. With support from the Centre for International Child Health, London, the Course is sponsored by the Women's Council of UK. Master Trainers from Bangladesh, Bhutan, Cambodia, China, India, Indonesia, Indonesia, Iraq, Jordan, Malaysia, Maldives, Mongolia, Myanmar, Nepal, Pakistan, Papua New Guinea, Sri Lanka, Tajikistan and Tibet and Tonga, Vietnam have completed the course.[1],[2],[3] Model III: Inclusion into mainstream schools Interdisciplinary meetings held with the members of National Research Stock Soars staff:
  • Social worker needed to discuss inclusion with parents
  • Work began preparing the child socially, emotionally and physically to meet with the requirements of an inclusive classroom
  • Meet and introduce the concept of inclusion to the principal/management of the school being approached for admission.
Making ordinary schools inclusive: Model of government-aided school
  • Disabled students have been placed into regular schools [Figure 4].
Figure 4: Peers always lend a helping hand

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Inclusion in mainstream schools: Model for municipal school The three D's developed:
  • Demystification of disability was carried out through sharing of information and techniques with parents, families and teachers
  • Deinstitutionalisation involved moving away from specialised settings to community settings
  • Decentralisation of services was possible due to training programmes and alliances [Figure 5].
Figure 5: Dr Vipasha Mehta Ph.D. in Philosophy

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  Outcomes Top
  1. A technical contribution was done providing a strong base for children with CP and other physical disabilities
  2. For the first time, the government recognised neurological disorder as one of the 11 classifications
  3. More than 5000 babies, children and young people have come for assessment and remedial programmes over the last 48 years
  4. Over 10,000 preschool children with and without disabilities admitted into inclusive nurseries
  5. Over 400 models of employment have been developed. The most important contribution was to move from C and D category jobs such as basket weaving, telephone operating and other stereotyped jobs in which the disabled adult have been put in, through the ages to A and B category jobs
  6. Holistic programmes combining education and treatment under one roof were set up. Parents and their voices were addressed, and they were empowered to carry on effective home management
  7. Educational reforms needed for the Board Examination System were introduce. All over the country, several concessions for children were done, allowing children to have amanuensis, extra time, etc. This was done both at the school and university level (very recently, we have won a long battle allowing children to use computers and other communication aids rather than writers)
  8. Pedagogy on a national level helped decentralise the services. Over 400 teachers have been trained
  9. A major outcome was the outreach and spread of services. This led to decentralisation. A profusion of regionally based and autonomous Societies grew with the help from SSI based on our first model [Figure 6]. Nationally, The Spastics Society of India (SSI) has promoted the growth of services at Kolkata (1974), Delhi (1977), Bangalore (1980) and Chennai (1985) and through their courses the others. These centres in turn spun off peripheral services in their regions, which in turn created services catering to the individual needs of each child with treatment and appropriate rehabilitation techniques of CP. 18 of the 31 states (there are now education and therapy services for children with cerebral palsy in Andhra Pradesh, Assam, Delhi, Goa, Gujarat, Haryana, Jammu and Kashmir, Karnataka, Kerala, Madhya Pradesh, Maharashtra, Meghalaya, Orissa, Rajasthan, Tamil Nadu, Uttar Pradesh, Uttarakand and West Bengal) have replicated the same model combining education and treatment under one roof. Today, no one is questioning whether they can be educated or not but how they should go about it in mainstream regular schools
  10. Community training programmes for parents helped empower them to take ownership for the inclusion of their children in regular schools, helping to make the system more cost-effective, and they became a critical cadre of people created within the community to push for inclusive education
  11. An Asia Pacific Course started called 'Community Initiatives in Inclusion' has trained over 150 Master Trainers from Bangladesh, Bhutan, Cambodia, China, India, Indonesia, Indonesia, Iraq, Jordan, Malaysia, Maldives, Mongolia, Myanmar, Nepal, Pakistan, Papua New Guinea, Sri Lanka, Tajikistan and Tibet, Tonga and Vietnam. These Master Trainers have returned to spread inclusive education in their respective countries
  12. Engaging with Government: Training programmes were conducted for Master Trainers of the District Institute of Education and Training programme and information and material in local languages and in Marathi providing 85,000 teachers on how to identify disability across the state
  13. Over 900 Child Development Project Officers (CDPOs), Assistant CDPOs and Supervisors of the governments were engaged with Integrated Child Development Services (ICDS) programme in seven states of Maharashtra oriented to the philosophy and strategies of inclusive education. They in turn are to train the teachers they supervise in this cascade model
  14. We have a programme in partnership with Sarva Shiksha Abhiyan (SSA) in Maharashtra, as the Technical Resource Support Agency for the government. 600 teachers were trained under SSA, in all three Zones of Mumbai, West Zone, South Zone and Thane Municipal Corporation on Inclusive Education, Learning Disabilities and teaching with Multiple Disabilities
  15. ,000/1 million people reached out to around the country.
Figure 6: Reach of Services of The Spastics Society of India

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  The Way Forward Top
There has been undoubtedly a quantum leap. The educational needs of children with CP and other disabilities have been noted. Inclusive education has taken centre stage. The Right to Education Act 1995
  • The Right to Education Act (RTE) has been a landmark legislation for the first time, making it a constitutional directive to include education of disability in all programmes. It would be a violation of the Constitution to refuse admission to children with special needs now
  • It is imperative to ensure that it does not remain another piece of legislation gathering dust but is put into action. However, the challenges are huge, when we think of an approximate figure of 51% of CWDs being illiterate, with no schools to go to. If the RTE is to be operationalised and not merely remain a document collecting dust, clearly reforms are urgently needed.
Mapping
  • Robust data about the whereabouts of children with special needs are still not available; there is a startling discrepancy between existing data and ground-level findings. There is a need for disaggregated data of CWDs to facilitate micro planning for educational and health supports for CWDs in their jurisdictions. This will determine what needs to be contained within local resource support organisations, and it is only through this process that CWD can be supported for their identified needs
  • Building on that knowledge, United Nations Children's Fund (UNICEF) and the UN Statistical Commission's Group on Disability Statistics have developed a new approach. The new tool for identifying and screening of childhood disability is the international standard for monitoring childhood disability. This is now being called by UNICEF Multiple Indicator Cluster Survey. It should be adopted as it has been tested in 15 countries.
State intervention
  • SSA has agreed that their existing block and district resource centres (DRCs) need to be upgraded to IEDH. The Cluster Resource Centres and DRCS exist only on paper for the multiply disabled population as they are at distances that are impossible for parents of physically disabled children or adults to walk to. The needs of the child with disability are not identified. Only the children with the most obvious disability are being identified.
Teacher preparation
  • Education for all cannot happen without inclusive education. The training of regular teachers is imperative. By understanding that changes in teaching methods can make the curriculum accessible to all children, including those with disabilities, a teacher or principal is well on the way to improving the overall quality of their school. The government's teacher training courses also need to be upgraded
  • All schools, private and government need to make the RTE operational and synthesise it with the existing government programme of SSA and NCTE as well as programmes being run by NCERT, University Grants Commission, Indira Gandhi National Open University and the central universities to make RTE a reality.[14]
  • 'The need of the hour is preparing teachers, transformation of schools, changing role of teachers redesigning syllabi. Without this, RTE would fail to bring justice to children who have suffered exclusion and neglect for years' (Alur M, 2012 'Huge learning Curve Ahead' The Indian Express, June 2012).
Health services
  • The health system, too, needs to be improved. Health and educational services need to be synchronised. Medical and paramedical courses still do not provide the necessary training on how to deal with CP. Special modules and courses for doctors need to be added to the syllabi.
Monitoring and evaluation
  • It is critical to ensure that rigorous monitoring and evaluation of projects are done to ensure the targeted beneficiaries are able to access good-quality basic education.

  Women and Child Development Schemes Top
  • The Ministry of Women and Child Development runs the largest preschool programme, the Integrated Child Development Scheme (ICDS), but still excludes children with disability by not specifically including them in its definitions of target groups. The ICDS needs to fall in line with what is now law in the country and their training programmes of Anganwadi workers need to include modules about identifying and teaching special needs children.

  A Concluding Discourse Top
My experience shows that inclusion can take place within existing resources and however poor the country is. Inclusion is an evolutionary process. In fact, it is in a small way that all movements begin. Macro change can be difficult and slow, especially in resource-trapped developing countries. Micro efforts are very valuable and inclusion practices need not wait to begin only after systemic changes take place. All over the world, these small pioneering efforts can spear head Governments into action, before State initiatives take over. In the Transition Phase, these efforts act like a catalyst in changing policy within the wider educational system. The disability field is controlled by powerful professionals belonging to the middle and upper classes who have been trained in Western countries and transferred the Western models to their areas. They have clung onto their professionalism guarding their territorial spaces. Often, these were paradigms that had long been abandoned in their own countries but were seen to be appropriate for the host countries. Policy-makers and professionals 'look to the West for inspiration',[15] and hence, an entrenched pattern of development in this sector took place in the developing countries. It is essential to ensure that Northern paradigms are not transferred and taken out of context as we have done during the colonial and the post-colonial period.
  Lack of Funding Should Not Mean That Children are Segregated Top
The cost of exclusion is staggering. The cost of inclusion is cost-effective and sustainable. Drawing from my experience, I can say that inclusion can take place however poor the country is. Inclusion does not happen only where there are more resources. Due to the lack of special schools in India, a casual integration has taken place. The number of CWDs in normal schools far exceeds the number of children in special schools. Community action and community revitalisation, through the spread of education and awareness programmes, have to be done on a parallel level to changing State attitudes. Existing resources within the community are valuable resources to work with. Families and communities play a very valuable role and we have fallen back on their support.
  Civil Society and Human Rights Top
The aim is to build civil society based on values of social justice and human rights: where all children's needs are respected, where those who suffer from acute marginalisation and oppression are reinstated into our lives as citizens. The state is the trustee of the nation and will need to legitimise this into the policy process. We NGOs also urgently need to show how to implement and operationalise inclusion into action. Ingrained attitudes do not change quickly. No single task will provide the solution; undoubtedly, it will be a Himalayan task to ensure that civil society is built up on the bedrock of the social justice and human rights.
  What Remains a Challenge to be done? Top
Looking back, a quantum leap has been made in that people like Malini who were made to stay at home earlier are now able to come out and contribute. However, this is only those few who are privileged in the cities. Although we could not have achieved what we did without the help of the medical fraternity, it still is an individual effort. The system still fails to support children and adults with such profound difficulties as Malini, majority of children with disability in India are out of services at high risk of getting deformed (World Bank 2007)[16] ('People with Disabilities in India; Status, Challenges, and Prospects' World Bank and the Ministry of Social Justice and Empowerment, Government of India, November 2007). My own fear in this twenty-first century is, if my daughter was to be born in a rural area, will she get some care? Will the existing heath care systems know what to do with her? Will her needs be met? Or will she be a victim of neglect, lack of knowledge, misunderstood and treated as the village idiot or will as we as parents be told 'nothing can be done for her?' I am sad to say this could still be her plight. There is enough evidence to suggest that if the mechanism of intervention in the implementation process is worked out, it makes more economic sense to have children in integrated set ups compared to costly special schools (World Bank, 1979).
  What Happened to Malini? Top
I am tempted to go back to Malini … what happened to her during the growth of this movement? She became Senior Events Manager at Oxford Book Store, in Bombay. She got two Master's degrees from London! She is presently a Diversity Officer in Tata Sons, Bombay. To quote Malini 'Life is not a chocolate cake'. 'I had to come to terms with the fact that I will always be different…perhaps life is meant to test you, throwing in your way hard emotional knocks, and I just need to spring back like an India rubber ball…how else can you cope?' Speaking for myself... My experience has been based on the personal experience I have had with my daughter Malini and professional with hundreds of parents and families. Living and interacting with people with disability have certainly added to my learning curve. I do strongly believe for change to happen it is essential to listen to their voices with professionalism combine with compassion, to discard one's aura of professionalism. To listen to the voices of disabled people who are powerless and needy. I have learnt much more than I have given. Having seen their success, the smiles of many children and youth have been my award utterly rejuvenating [Figure 7].
Figure 7: Malini Chib Author, Researcher, Lecturer, working as Diversity Officer and Inclusion at Tata Sons, Bombay House

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The question that faces us is 'who is disabled?' Is it them who think, hear, speak, differently, or is it us, who cannot see, understand or accept them? Surely, we need to change our own mind sets become more tolerant, become more inclusive and celebrate differences. Financial support and sponsorship Nil. Conflicts of interest There are no conflicts of interest.

 
  References Top

1.
Alur M. 'Invisible Children: A Study of Policy Exclusion'. A Thesis Submitted for the Degree of Doctor of Philosophy, Institute of Education, University of London. New Delhi: Published by Viva Books Private Limited; 1998.  Back to cited text no. 1
    
2.
Harriss White B. The Political Economy of Disability and Development with Special Reference to India. Paper Available at Elizabeth House. Oxford: Development Studies; 1995.  Back to cited text no. 2
    
3.
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    Figures

  [Figure 1], [Figure 2], [Figure 3], [Figure 4], [Figure 5], [Figure 6], [Figure 7]


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1 Commentary on “Empowering caregivers of children with learning and developmental disabilities: from situation analysis to community-based inclusive development in Kilifi, Kenya”
Kathy Leadbitter, Gauri Divan
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  In this article
Introduction
Historical Backg...
The Spastics Soc...
Interdisciplinar...
Early Diagnosis
Parents as Partners
The Current Thin...
Universal Design
What Is UDL in E...
Inclusive Education
National and Asi...
Outcomes
The Way Forward
Women and Child ...
A Concluding Dis...
Lack of Funding ...
Civil Society an...
What Remains a C...
What Happened to...
References
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