Disability Studies Quarterly
Spring 2004, Volume 24, No. 2
<www.dsq-sds.org>
Copyright 2004 by the Society
for Disability Studies


Commentary -
Persons with Disabilities in India:
A Special Educator's Personal Perspective

Dr. Jayanthi Narayan
National Institute for the Mentally Handicapped (NIMH)
jnarayans@yahoo.com

Indian heritage has viewed persons with disabilities as contributing members of the larger society. From 320 to 480 A.D., workshops were set up for vocational training of persons with physical disabilities (Mukherjee, 1983). India has the proud history of great musicians, rulers, and philosophers with disabilities. To cite a few, King Dridharashtra, in the famous epic Mahabharata, was blind. So was the great poet Surdas who was said to have composed more than 125,000 songs. Ashtavakra, who had multiple disabilities, was a respected philosopher (Narayan, 1996). It is also interesting that individuals' impairments were considered an opportunity to employ them in specific jobs. For example, persons with hearing and/or speech impairment were employed by the kings in medieval India to copy confidential government documents.

Various religions in India, including Hinduism, Buddhism, Jainism, Sikhism, Islam, and Christianity, preach and practice respect and service to people with disabilities. Hinduism teaches that persons who help others who are poor or disabled attain "punya" -- a step towards heaven.

In general, people in India show sympathy and compassion to persons with disabilities. But is that enough? Do people with disabilities have a respectable place in the society, with equal opportunities and rights? Where are we today? What is ahead? I will address these questions as a special educator working in the field of mental retardation in India for more than 30 years.

Disability Rehabilitation in Independent India

Services for persons with disabilities have grown gradually in India. In pre-independent India, there were a few special schools for children who were blind or deaf established by voluntary organizations. Hospitals for mentally ill persons also admitted persons with mental retardation (Miles, 1994).

When the Constitution of India was framed in 1950, articles under the Directive Principle of State Policy emphasized the right to education, employment (Article 41), and free compulsory education for all children under 14 years old (Article 45). With the literacy rate generally improving, (16% in 1951 to 36% in 1981; Narasimhan and Mukherjee, 1986, 65.4% -Census, 2001), focus on education of children with disabilities gained importance.

A major turning point in the rehabilitation of persons with disability was the paradigm shift from charity to rights; sympathy to equality, as indicated by the Persons with Disabilities Act of 1995, which promotes equal opportunity, protection of rights, and full participation of persons with disabilities.

When I was a student of special education back in 1971-72, I remember many people raising their eyebrows at me. They questioned, "What are you studying for? What kind of children will you work with? Are they not mad? Didn't you get good enough grades in undergraduate courses to get into 'better' courses?" At that time in India, only two schools offered courses in special education for mental retardation at the diploma level. There were no university programs. I had to go to the United States of America to get a master's degree in special education. Many of my colleagues have qualifications from the United Kingdom.

Today in India, we have bachelor's and master's level programs in special education. These courses are well respected and sought after by many students. The Government has enacted the Rehabilitation Council of India (RCI) Act (1992) to regulate professional development in disability rehabilitation, and to ensure professionals are certified according to thorough procedures. Curricula for training in courses pertaining to disability rehabilitation are standardized by RCI to ensure uniformity throughout the country. This has led to professionalism within the programs.

I see a distinct difference between the time when I was a student of special education and now -- a great leap towards progress. Today I find that my students, who are taking courses in special education, are looked at with admiration and respect. Many of our trained professionals are employed in other countries as well.

Prior to the legislation noted above, there was limited awareness of disability-related needs. Persons with disabilities were part of society but special programs for them were limited. Those who managed to cope in regular schools were allowed to study there; those who could not cope were rejected from the schools and stayed at home.

Such exclusion created a movement among parents of the rejected children to start special schools, and several were established by families of persons with disabilities. Today, services include prevention, early detection, early intervention, inclusive education of children with milder disabilities, establishment of government-supported special schools for children with severe disabilities, and vocational training and employment opportunities.

Governments at central and state levels provide scholarships for education, aids and appliances, assistive devices for those in need (hearing aids, crutches, wheelchairs, Braille slates, etc.), loans to start small-scale industries that are ecologically viable, and recognition of efforts through awards. Today we find persons with disabilities voicing their needs and establishing their rights.

Parent groups are very powerful in India for children who cannot speak for themselves, including those with mental retardation, multiple disabilities, and in some cases, cerebral palsy and autism. To answer the major concern of parents, "Who will look after our children when we are gone?" the Government of India has enacted the National Trust Act (1999) covering persons with autism, cerebral palsy, mental retardation, and multiple disabilities. The Trust Act provides facilities with suitable care provided for varying durations in the absence of parents/caregivers, depending upon the need of the family.

In earlier years the joint family system was a support to persons with disabilities. India did not have institutions because there was always someone at home to provide support to the disabled person, or his/her parents. Now, with nuclear families increasing, parents feel the need for help; the National Trust Act is a step towards meeting their needs.

National Institutes

The Government of India, under the Ministry of Social Justice and Empowerment, has established six National Institutes with the objectives of: generating human resources, conducting research in the area of disability rehabilitation, developing service models, carrying out extension and outreach services, documenting and disseminating information in the respective disability areas. The National Institutes are: National Institute for the Physically Handicapped, National Institute for the Orthopedically Handicapped, National Institute for the Visually Handicapped, National Institute for the Hearing Handicapped, National Institute for the Mentally Handicapped, and the National Institute of Rehabilitation, Training and Research.

With the shift from "Charity to Rights" the Ministry earlier known as the Ministry of Welfare is now called the Ministry of Social Justice and Empowerment. Since the National Institutes were named two decades ago, to keep up with the current trend, there is consideration of replacing the word "handicap" in their titles.

I have coordinated the Department of Special Education in the National Institute for the Mentally Handicapped (NIMH) for the past 19 years. We at NIMH have seen a positive change in the attitudes of people towards disabilities. We see persons with disabilities accepting their disability and taking pride in being contributing members of society.

Twenty years ago parents often were passive in relation to professionals; today, they voice their concerns. They are aware of their rights and eager to share their experiences with other parents. Many of them do not express guilt or shame anymore, but rather pride in the achievements of their disabled child. Parents are eager partners with professionals.

Fifteen years ago a young couple came to NIMH with their child who was diagnosed with mental retardation and visual impairment. He was especially precious to the parents because the mother had experienced several miscarriages. At first, the parents had been devastated on learning the child's conditions. But within a year, the mother became the leader of a group of families, recruited parents and spoke to them about her experiences, and helped us form other parent groups. Other parents started looking up to her. Although unfortunately she died a few months back due to illness, she continues to live through the parent groups she started.

A large number of persons with disabilities from remote, rural parts of India now seek professional services. More than 75% of India is rural. We have to address the needs of the rural and tribal areas in order to assure that no one in the disabled population is rejected from receiving education and other services. In order to achieve this, community-based rehabilitation (CBR) programs have been launched. With CBR, every community will include their persons with disability and provide them with opportunities to be contributing members of society. CBR programs aim at providing services for persons with disabilities within their communities where they live, as well as accepting them as contributing members of the society. In short CBR is 'by the people, for the people, and of the people'.

What Have I Seen?

Even with all the constraints, we have certainly moved forward. The rich, fertile India that Columbus set out to locate while traveling through the west (and thus discovering America) was once rendered poor after many invasions. Yet the country has gathered itself to stand with pride. Planning and implementing programs are difficult with all our social, economic, cultural, religious, linguistic, and geographical variations. For example, consider an Indian currency note: its denomination is written in 16 officially recognized languages. Now consider developing an awareness pamphlet on disability for the general public in the country. It must be produced in many languages.

We also have to consider cultural acceptability. In many rural areas, a male professional will not be accepted to train mothers. Certain dress codes are traditional but very difficult for a young woman with mental retardation to wear, due to complex procedures in getting dressed. In some parts of India, finger feeding is the correct way to eat, whereas in other parts, using utensils is accepted. To train a child with disabilities requires that the trainer learn the local skills first. These are a few of the challenges I have faced. We are marching ahead despite the differences. In fact, we respect and appreciate the differences.

Research on indigenous practices in the area of disability rehabilitation has gained attention. At the same time, keeping pace with technological advances worldwide, India has made progress in development of computer software, and in orthotic, prosthetic, and other assistive devices for persons with disabilities.

What Have I Learned?

With all the achievements just reviewed, can I say we are doing well? Do all individuals with disabilities have their rights? Is there equality? Certainly I have seen significant progress during the past 30 years. But that is not enough. We have a long way to go. Superstitions, illiteracy, poverty, and misconceptions remain as hurdles in the path to progress. For example, I still see some families doing everything for their disabled children, not giving them a chance to do things themselves. According to such a family, "He is God's gift and should be looked after well!" Though they have good intentions, what the family does not realize is that they create learned helplessness in the child, preventing him from becoming independent. There are some families with, say, three children who have disabilities due to genetic causes, yet the parents want to continue having children until "God gives [them] a normal child." Genetic counseling and educating them is a Himalayan task for professionals.

There are also day-to-day challenges. How do I answer a mother who says, "I am not just a parent of a disabled child. I am also a mother of non disabled children, a wife, a daughter-in-law, and a person by myself. How can I carry out all the home instructions?" This is a very valid and practical question. To answer such mothers and reduce the burden, family interventions through involving siblings, grandparents, and the community where possible, are an effort in progress. Each family is different. The key to success is our sensitivity to the resources and needs of each family.

Working with schools to integrate and include children with disabilities is a major task. The rigid systems involved in admissions, curriculum, and evaluation make integration difficult. In addition, lack of awareness among the administrators, teachers, parents of non disabled children, and the peer group make integration even more difficult. Effort towards creating awareness at all levels to accommodate a child with disability in the school of his choice is imperative to achieve equality in education.

Vocational training and employment demand preparing the community to accept those with disabilities by looking at their strengths rather than their disability. For example, I had a student who was a young man with a moderate level of mental retardation. He did a perfect job of taking care of his father's cattle, cleaning the shed, grazing the cattle, delivering milk every day to selected houses, and generally looking after the cattle. His father told me one day, "With my son looking after the cows and buffalo I now have double the cattle." He further added, "Tasks such as cleaning the shed and washing the cows, which are boring to me, my son enjoys doing and he does better than myself."

I had a young student with a specific learning disability attending regular school. He was very much sought after by his classmates for assigned group tasks because he would remember every word their teacher spoke in class (Auditory memory). Everyone has something to offer and it is up to us to seek it. I have learned to look for strengths in everyone.

My students inspire me with such questions, that one would wonder about their (dis)ability. For example, on January 30th I was discussing current events in class with a group of 10-12-year-old children with mental retardation, and mentioned Mahatma Gandhi, his greatness, and that he was assassinated on that day many years ago. Three months later on Good Friday I told the same group about Christ and why it is called Good Friday. One student asked me, "Why do all good people have horrifying deaths? You told about Gandhi that day and now about Christ." Honestly, I was dumbfounded. I could not answer her. Do you have an answer? Further, I am amazed at her memory relating two different events and the ability to infer. Yes, they bring surprises. I feel the more I work with them, the more I have to know about them.

My best teachers are my students. I learn from every student and refine myself. The journey has to continue, finding ways and means to bring about equality among mankind. An Indian poet Nobel Laureate Rabindranath Tagore said,

"The problem is not how to wipe out differences, but to live together with differences intact."





Copyright © 2000-13, The Society for Disability Studies. If you encounter problems with the site or have comments to offer, including any access difficulty due to incompatibility with adaptive technology, please contact the Web Manager, Laura Seeger. Disability Studies Quarterly acknowledges and appreciates The Ohio State University Libraries for publishing DSQ as part of the University's Knowledge Bank initiative.