For disabled people in India, life is a constant struggle -- for education, employment and access to public places. In the bigger cities, there is a glimmer of awareness about the need to include the disabled in mainstream activities. In poor rural areas, however, people with disabilities are among the most marginalised sections of the population.

In addition to the lack of special services that would allow them to lead independent and fruitful lives, disabled people in India have to battle cultural prejudices. There is a belief that in some way people who have a disability are paying in this life for sins committed in a previous life.

Government support for the disabled has been long in coming and is still inadequate. For a government struggling to provide basics such as food and water, disability is a low priority.

Defining disability

The term 'disability' has been defined in many ways. It includes terms such as ‘impairment’ and ‘handicap’. The World Health Organisation (WHO) defines each term distinctly.

Impairment is any loss or abnormality of psychological, physiological or anatomical structure or function.

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.

Handicap is a disadvantage for a given individual, resulting from an impairment or a disability, that limits or prevents the fulfilment of a role that is normal (depending on age, sex and social and cultural factors) for that individual.

The WHO definitions do not take into consideration the social perspective. The social model defines disability as the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical and social barriers.

According to the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995, of the Government of India, a person with disability is a person suffering from not less than 40% of any disability as certified by a medical authority. The conditions included as disability are blindness, low-vision, hearing impairment, locomotor disability, mental retardation, leprosy and mental illness. Autism, cerebral palsy and multiple disabilities (e.g. mental retardation with blindness) have been listed as disabilities in the National Trust Act of 1999.

Prevalence of disabilities

There are no definitive figures on the number of disabled people in the country. The 2001 Census report points to a disability percentage of 2.13%, putting the number of disabled people at 2.19 crore or 22 million.

According to the National Centre for Promotion of Employment for Disabled People (NCPEDP), a leading voluntary organisation fighting for the rights of the disabled, the figure is much higher. NCPEDP’s most conservative estimate puts the number of disabled in India at 5% to 6% of the population or 60-70 million.

According to the National Sample Survey 2004, disability among people in rural areas is much higher than in urban areas: 1.85% as against 1.5% in urban areas. Some 2.12% of males in rural areas are affected by some form of disability compared to 1.67% males in urban India. Similarly, disability among females in rural areas is 1.56%, compared to 1.31% in urban areas.

The survey also found that 55% of the disabled were illiterate; only 9% had completed higher secondary education. About 11% of disabled people in the age-group 5-18 years were enrolled in special schools in urban areas; in rural areas it was less than 1%.

Causes of disabilities

According to WHO, as many as 50% of disabilities are preventable and directly linked to poverty.

Poor nutrition, limited access to vaccination programmes and health and maternity care, poor hygiene, inadequate information about the causes of impairment, are some of the causes of disability in poorer sections of the population. Inbreeding, sanctioned by social practice in some communities, has led to significant increase in disabilities. Hazardous working conditions are another cause of disabilities in people.

Prevention, early detection and intervention are key to containing the number of disabled. Government hospitals are expected to have the expertise and equipment to screen and identify disability. Positive steps towards early identification of disability include the organisation of eye camps and the involvement of anganwadi workers (nursery teachers in rural and urban poor areas), village communities and mass media.

Role of the government

In the 1990s the government passed a flurry of legislation concerning the disabled.

The Rehabilitation Council of India Act 1992 led to the establishment of the Rehabilitation Council of India (RCI). The RCI is responsible for standardising and monitoring training courses for rehabilitation professionals, granting recognition to institutions running courses, and maintaining a Central Rehabilitation Register of rehabilitation professionals. The RCI Act was amended in 2000 to give the RCI the additional responsibility of promoting research in rehabilitation and special education.

The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act 1995 for the first time provided a legal framework for persons with disabilities and protected their rights. It lays down what education and employment opportunities must be created for the disabled, stipulates the creation of barrier-free access to public places and public transport, and supports the right of disabled persons to live independent lives.

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 the promotion of measures for the care and protection of persons with these disabilities 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 organisations to provide need-based services in times of crisis to the families of the disabled.

Government has also given concessions in travel, customs duties, income tax and bank loans for disabled people.

The ground reality

On paper, there is an impressive agenda for protecting and promoting the interests of the disabled. The ground reality, however, is very different.

Little has been done to change the way people view disabilities. It is still seen as either an unalterable medical condition or an act of fate. At its worst, society rejects the disabled person and makes him or her an outcaste. At best, he is an object of pity. The onus of caring falls on the family and not the community. The concept of the community providing sufficient inputs to allow the disabled person to be an independent, earning member of society has not taken hold.

Prevention and early detection of disabilities still lag behind. While the Pulse Polio drive and immunisation against diphtheria, tetanus and pertussis have been quite successful, efforts for the prevention of other conditions such as blindness, deafness and neurological disabilities have been dismal. The incidence of developmental disabilities (e.g. mental retardation, autism) has increased to an alarming level.

Various schemes have been offered for the welfare of the disabled population, but little effort has been made to publicise them. Consequently, disabled people, their families and organisations that work for them are either unaware of the provisions or cannot avail of them. At times the process of availing of the benefits of schemes is so cumbersome and time-consuming that most people prefer to bypass them.

Government officials charged with implementing the schemes often fail to do so, particularly in rural areas. Detection and treatment camps are not held; Government hospitals that are supposed to treat disabled people often do not have the required medical expertise, and even the simple process of getting a medical certificate that declares a person officially disabled is a time-consuming one.

The 1995 Act makes several provisions for the employment and education of disabled persons. A fairly extensive government infrastructure has been built to facilitate employment of the disabled. There are 23 special employment exchanges in the country, 55 special cells in the regular employment exchanges, and 17 vocational training centres across the country. There are five national institutes for the handicapped.

Three per cent of jobs in government services are reserved for the disabled under the law. It is unclear how many are filled. A report brought out by the National Centre for Promotion of Employment for Disabled People (NCPEDP) in 2004 revealed that in the past four years, the annual reports of the Chief Commissioner for Persons with Disabilities, the Ministry of Social Justice and Empowerment and the Ministry of Labour do not provide any information on the implementation status of the 3% reservation.

The report also reveals that the office of Chief Commissioner for Persons with Disability, who is responsible for coordinating and monitoring work in this field, and the utilisation of funds by the central government, had been vacant for over nine months.

Education for the disabled has also been adequately provided for under existing legislation. There are more than 3,000 special schools in India today. Of them, 900 are schools for the hearing impaired, 400 for children with visual impairment, 700 for those with locomotor disabilities, and 1,000 for the intellectually disabled. More than 50,000 children with disabilities are enrolled in the Integrated Education for Disabled Children, a government-sponsored programme.

A few schools have resource rooms and employ special education teachers to help retain children with special needs in their system. Sadly, these facilities are found in very few cities. There are almost no special schools or special educational services in rural India.

Efforts at integrating children with disabilities into mainstream schools have been even less successful. Under the law, 3% of seats in educational institutions must be reserved for the disabled. A countrywide survey on the enrolment of disabled children in educational institutions released in September 2004 revealed that only a fraction obtained admission. Between them, the 119 universities that responded to the survey conducted by the National Centre for Promotion of Employment for Disabled People (NCPEDP) had enrolled only 1635 disabled students.

The 89 schools that responded to the survey had enrolled 382 students with disabilities. About 18 schools cited the existence of "special schools" as reason enough to refrain from doing so.

Provision of a barrier-free environment also remains a pipe dream, though it, too, has been mandated. It is the odd public building that will have any kind of access for the physically handicapped, or signposting in Braille, even in the biggest cities. Public transport is mostly out of bounds for independent disabled travellers anywhere in India.

The government clearly needs to do more than just enact legislation and announce action plans. It must put enforcing and monitoring mechanisms in place. An Action Plan for making education disabled friendly by 2020, announced by the Human Resources Development Ministry in March 2005, sets no interim targets.

The Indian mindset, too, must change. Most Indians view disability as a matter of charity rather than a human rights issue. From this perspective, the disabled remain beneficiaries of a scheme rather than managers of interventions meant for them.