PERSONS WITH DISABILITIES IN INDIA – A COMPILATION

- Mahesh Chandrasekar, Jul 2006

INDIA

Country Facts:

• Population - 1027 (in Million) [Source: Census of India, 2001]
• No. of people living below $1 a day: 34.7% (Source: World Development Indicator, 2005)
• $2 a day figure – 79.9% (Source: World Development Indicator, 2005)
• GDP per capita –  US$ 613 (Source: World Bank)
• Life expectancy:  63 years (Source: Census of India, 2001)
• Literacy rates:  65.38% (Source: Census of India, 2001)
• Malnutrition:  21% of India’s total population (Source: Human Development Report, 2004)

Disability in India

Defining disability in India:

There is no universally agreed definition of disability. Historically, disability has been seen primarily as a medical condition – a problem located within the individual. The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act 1995 defines disability as one or more of the following: blindness, low vision, leprosy cured, hearing impairment, locomotor disability, mental retardation and mental illness. It says that to be considered disabled, a person must suffer from not less than 40 per cent of any disability as certified by a medical authority. The medical understanding of disability clearly informs the act, but its tight and selective definitions of disability, and its 40 per cent threshold, means that some key disabilities, such as autism and other spectrum disorders, haemophilia, thalassaemia, severe facial disfigurement, and individuals with more mild disabilities, are excluded. (Mainstreaming disability in development: India country report, Disability KaR, DFID)

In India the terms ‘impairment’ and ‘disability’ are often used synonymously. However with the social understanding of disability gaining widespread acceptance most of us are beginning to realize the importance to make a distinction between the two terms.

The Disability Scenario:

The estimation of disability vary a great deal but for policy formulation and provision of services it is vitally important that reliable estimates of incidence and prevalence of various disabilities are made in line with accepted definitions of various categories of disabilities. However, disability is not a well defined condition, and there are many terminological and conceptual difficulties. This means that the data should be used with a degree of caution.

International

The estimates of the number of disabled are dependent on the, methodology, definitions being used and inadequacy of disability data. Published estimates of national, regional and global disabled populations are largely guesstimates. It is reported that the WHO and the United Nations have for long held the view that people with disabilities comprise approximately 10% of any national population.  However, according to Peter Coleridge (2000 - page 6), he reports that the author of the WHO now estimate that the proportion is more likely to be 4% of the population in developing countries and 7% in developed countries. Robert L Metts (2000 Page 6) states that the United Nations Development Programme (UNDP) which agreed with the figure of 10% has now withdrawn from this estimate and projects the global proportion to be 5.2%. Despite this international trend towards a lowering of previous estimates some still estimate disabled proportion to be 10% or more. (Disability Issues, Trends and Recommendations for the World Bank, Robert L. Metts, February, 2000). As so many factors are tied with the enumeration process, no two studies will agree.

National

In India the disability information has been collected through sample surveys and censuses. The most recent being the Census of India in 2001 and the National Sample Survey Organisation (NSSO) which conducted a survey of ‘Disabled Persons in India’ during 58th round (July - December 2002).

According to Census 2001 the total number of disabled in India was reported at 21 million which constitute more than 2 percent of total population. The data reported by the Census 2001 is proportionately high when compared to data reported by NSSO 2002. The NSSO estimated the number of disabled persons in the country to be 18.49 million which formed about 1.8 per cent of the total population.

Table 1 – Estimated number of persons with disabilities in India

Source: NSSO 58th round (Jul-Dec 2002)

Due to the differences in the definitions of disability used by the two institutions namely the Census of India and National Sample Survey Organizations the data reported are not comparable.

Secondly, if we look at types of disabled in India as estimated by two organizations, according to the Census of India the proportion of Seeing Disabled in total disable population is 48.55 percent, where as according to NSSO, their proportion is 15 percent. Similarly in case of people with Movement Disabled, census estimates at 27.87 percent of total disabled population, where as NSSO estimates than at 57.51 percent. Thus according to Census of India disabled with seeing disabilities are leading in number in India, where as according to NSS disabled with locomotor disability are leading. Similarly there are differences in estimates in case of other disabilities as well. (Defining Disabilities: NSSO v/s Census by Kishor Bhanushali, Assistant Professor - Economics

Mahatma Gandhi Labour Institute, Ahmedabad http://www.disabilityindia.org/nsso-census.cfm )

For budgeting purposes, the Planning Commission uses a figure of 4 per cent of the population as being disabled. However, the real figure could be substantially higher. Organisations working in disability do not consider the census data to be accurate.

The reasons for the low figures in the census and sample surveys include:

·        Families protective/ hesitant to acknowledge the presence of disabled household members

·        Inability of families to identify mild disabilities

·        Lack of appropriately trained enumerators

·        Women being less likely to see themselves as disabled than men. (Erb and Harriss-White 2002, Mohapatra and Mohanty 2004)

·        Inabilities due to old age not being associated with disability

Rural and Urban

Despite its shortcomings, the census and sample survey clearly reveals that the majority of India’s persons with disabilities live in rural areas, the Census 2001 indicates 75% and the NSSO 58^th round 2002 indicates 73% persons with disabilities are from rural areas. The incidence rate, prevalence rate of disabilities are marginally higher in rural areas. India is a land of diversity and disparities. Insensitivity to the needs of persons with disabilities, lack of opportunities isolating persons with disabilities from the rural and urban communities appears to be almost uniform. However unlike in the rural, persons with disabilities from the cities have more access to rehabilitation and support services. Here again only a small percentage of persons with disabilities are able to benefit from these affordable and appropriate services such as access to rehabilitation, education or employment opportunities.

Gender

The gender disparity, the Census 2001 indicates 58:42 and the NSSO 58^th round 2002 indicates 59:41 male: female ratio could also be a reflection of the highly gendered nature of Indian society as a whole. Nationally, the numbers of women to men are 933 per 1000 (Census 2001 - http://www.censusindia.net/t_00_003.html).

There is a general preference for male children in India. Girls are often neglected and receive less food than boys. They are also less likely to be educated. If girls and women in general are not valued, then disabled girls and women are likely to be even less so. In addition, studies reveal that where men and women have similar impairments, women are more likely to continue working and carrying out household tasks, less likely to seek medical treatment and see themselves as disabled (Erb and Harriss-White 2002, Mohapatra and Mohanty 2004).

Prevalence

Table 2: The Prevalence rates (number of disabled persons per 100,000 persons)

Source: NSSO 58th round (Jul-Dec 2002)

Disabled Persons, Incidence Rates:

The disability incidence rates (The number of persons whose onset of disability by birth or after birth has been during the specified period of 365 days preceding the data of the survey collected by the NSSO enumerators, per 100,000 persons) was 69 in NSSO 2002 survey. The incidence rate was marginally higher in rural areas and similarly the incidence rate is reported to be higher among men than women (Male 76/ 100,000 and Female 60/100,000).

Disabled Persons, Onset of Disability since Birth:

Nearly 1/3rd of the disabled persons have acquired disability since their birth depicting impact of heredity, defective gene mutation, congenial defects, inappropriate services at the time of delivery and low level of nutrition and healthcare provided to the pregnant mothers during their pregnancy period.

Both rural and urban areas have reported around 33% disability cases since birth. A number of cases of inappropriate methods adopted at the time of delivery were also reported through several sample surveys as one of the causes of disability since birth. Hence measures for appropriate immunization coverage and nutritional food for the pregnant mothers needs to be given top priority to reduce disability rates at the time of birth.

(Source: Disability Status in India - Case Study of Delhi Metropolitan Region*, Bupinder Zutshi, PhD, Center for the Study of Regional Development, Jawaharlal Nehru University, New Delhi, India, September 2004, http://www.disabilityindia.org/StatusBookFrame.cfm )

Possible causes of Disability (impairment)

Almost 70% of the causes of disabilities in India are due to communicable diseases, serious illness during childhood, pregnancy related, polio, ear discharge, eye diseases, cataract, accident, violence and untreated injuries/ diseases. All of which have a strong relationship to poverty.

Poverty is the biggest cause of disability in India. The 360 million people in India who live below the poverty line are the most vulnerable to impairments, as they are more likely to:

·        suffer malnutrition

·        live in crowded and unsanitary conditions, making them more at risk of catching infectious diseases

·        have limited access to medical care

·        consult traditional healers

·        be poorly educated and lack basic knowledge

·        not immunise their children

In addition to it must be noted that many of the causes of disability (impairments) are unknown.

Road traffic injuries

Road traffic injuries are a huge public health and development problem and also becoming one of the major causes of disabilities. According to official statistics 80,118 persons were killed and 342,200 injured in road traffic crashes in India in the year 2000 (Accidental deaths and suicides in India 2000. 1-178. 2002. New Delhi, National Crime Records Bureau, Ministry of Home Afffairs). However, this is an underestimate, as not all injuries are reported to the police. The actual numbers are likely to have been in the region of 1,200,000 persons with injuries requiring hospital treatment and 5,600,000 persons sustaining minor injuries. The road traffic crash injury and death rates in India are unacceptably high and that the total number of annual deaths in India rank second only to China compared to all countries in the world. Both WHO and World Bank data show that, without appropriate action, these injuries will rise dramatically by the year 2020, particularly in rapidly-motorizing countries like India. This situation has remained almost the same for the last two decades and unlikely to improve unless there is a radical departure from previous practices and new systems are set up to control the problem (The Road Ahead Traffic Injuries and Fatalities in India, Dinesh Mohan, April 2004, IIT-Delhi, Transportation Research And Injury Prevention Programme).

Disability (impairments) leading to discrimination

The culture of the community greatly influences attitudes, beliefs and the prevalent values that determine the status of persons with disabilities in society.

Like many societies, in India too persons with disabilities face a lot of discrimination and are marginalized.

Three major type of discrimination have been identified: attitudinal, environmental and institutional. (Disability, Equality and Human Rights – A training manual for development and humanitarian organizations – Alison Harris with Sue Enfield, Oxfam GB, 2003). Persons with disabilities may be socially excluded by attitudes of fear and ignorance on the part of non-disabled people, who may use negative and pejorative language about them; or they may be excluded from society because of generally low expectations of what persons with disabilities can achieve. Culturally women face greater discrimination than men and women with disabilities are doubly discriminated both due to gender and their disability. Environmental discrimination occurs when public services, buildings, and transport services are not designed with access for persons with disabilities in mind. Institutional discrimination takes place when the law discriminates (explicitly or by omission) against the rights of persons with disabilities, making them in some way second-class citizens – without the right to vote, to own land, to attend school, to marry and have children.

As a result, persons with disabilities are hardly involved in decisions affecting their lives or the lives of others in their family/ society. People with disabilities have less/no access to resources and most of whom have little or no control over their lives.

Disabilities and Human Rights

Persons with disabilities are entitled to the full range of human rights just as all other human beings and this has belief has been reinforced with the enactment of the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act in 1995, a landmark legislation in the history of addressing issues of persons with disabilities in India.

In India there are four legislations to promote and protect rights of the persons with disabilities.  They are -

1.      The Mental Health Act of India, 1987 –  to protect the rights of persons with intellectual and psychological impediments as they are most vulnerable and are discriminated both outside and within the families

2.      Rehabilitation Council of India Act, 1992 - society to regulate and standardize training policies and programmes in the field of rehabilitation of persons with disabilities

3.      Persons with Disabilities, Equal Opportunities, Protection of Rights and Full         Participation Act, 1995 -

4.      National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mentally Retardation and Multiple Disabilities Act, 1999 – for the Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities

In February 2006, the Ministry of Social Justice and Empowerment have released the National Policy for Persons with Disabilities. (Source: http://socialjustice.nic.in/disabled/welcome.htm) which says – “The National Policy recognizes that persons with disabilities are valuable human resource for the country and seeks to create an environment that provides them equal opportunities, protection of their rights and full participation in society.”

In addition India is also a signatory to the UNESCAP (United Nations Economic and Social Commission For Asia And The Pacific) declaration to extend of the Asian and Pacific Decade of Disabled Persons, 1993-2002, for another decade, 2003-2012.   This declaration is also known as - Biwako Millennium Framework for Action - Towards an Inclusive, Barrier-Free and Rights-Based Society for Persons with Disabilities in Asia and the Pacific. The details of this declaration are available at http://www.unescap.org/esid/psis/disability/bmf/bmf.html.

India is also playing an active role in the ongoing consultations in drafting the Comprehensive and Integral International Convention on the Protection and Promotion

of the Rights and Dignity of Persons with Disabilities which is available at  http://www.un.org/esa/socdev/enable/rights/adhoccom.htm

Way back in 1998, the Central Public Works Department Ministry of Urban Affairs and Employment have developed the Guidelines and Space Standards for Barrier Free Built Environment for Disabled and Elderly Persons. However not many attempts have been made to implement these guidelines and each time we seem to be making fresh beginnings. (Source: http://www.disabilityindia.org/guidelines/main.htm )

The ideas and concepts of equality and full participation for persons with disabilities have developed very well on paper throughout the world, buy not so well on the ground so far. The feeling of commitment is not evident.

Following are brief explanations of the status of persons with disabilities in a few areas -

1          Access to Rehabilitation Services

A major step to providing rehabilitation services for all was initiated by the government in the late seventies when the Ministry of Social Welfare set up four National Institutes. They are - National Institute for the Orthopaedically Handicapped (NIOH) – Kolkata; National Institute for the Visually Handicapped (NIVH) – Dehradun; National Institute for the Mentally Handicapped (NIMH) – Secundrabad; and National Institute for the Hearing Handicapped (NIHH) – Mumbai. These institutes were set up to train specialised people to meet the needs of people with different disabilities.

In 1985, the Government of India launched the District Rehabilitation Centre (DRC) Scheme in collaboration with the National Institute of Disability and Rehabilitation Research (NIDRR), the US Department of Education and UNICEF. The project was aimed at providing a complete package of model rehabilitation services at every district level. There are more than 500 districts in India and some cover vast areas. Four Regional Rehabilitation Training Centres (RRTC) were established to support the DRCs. However, the DRC scheme has not covered all Districts and some of the existing ones may not be functioning to full capacity. The needs of the majority of disabled people are not met.

In continuing attempts to ensure rehabilitation services for all, the government has introduced a few other schemes. Most outstanding amongst these are ‘The Scheme to Promote Voluntary Action for Persons with Disabilities’ evolved during 1998 which provides grant-in-aid to voluntary organisations for the promotion of community based rehabilitation and the Assistance to Disabled Persons in India (ADIP) by the Ministry of Social Justice & Empowerment (MSJ&E) which is now responsible for disability issues.

At present, there are a number of benefits/directives/rules for persons with disabilities in the areas of education, health, labour, rural development, social welfare and other sectors. The result of all these attempts still means that only about 5% of the disabled population of India is reached. The question is why so few disabled people receive the full benefits due to them.

Most recently the Government of India introduced an ambitious plan with a target to reach 10% of the disabled population by the completion of the 10th Five Year Plan which started in 2002. The sole aim of the ‘National Programme for the Rehabilitation of Persons with Disabilities’ (NPRPD) is to reach disabled people in remote areas and the plan it proposes will have a delivery system directly from the State level to the Gram Panchayat level.

The 73rd Constitutional Amendment lists disability rehabilitation as one of the responsibilities of Gram Panchayats. At the community level, Panchayats can play an important role in various aspects of disability rehabilitation. In this model, rehabilitation at the community level implies direct involvement of the Panchayats in every process.

It is difficult to assess the achievements half way through the plan. However, going by the achievements of the previous Five Year Plan there has been limited progress.

It has taken a long time to achieve to the estimated 5-10% coverage in rehabilitation services and training. But for the first time the Government of India has acknowledged that rehabilitation service delivery mechanism at Village and Gram Panchayat level will be a community based approach that can start at Panchayat level.

NGOs could play a bigger role to implement community based rehabilitation programmes at village to District levels and to organise disabled people and their families as pressure groups to ensure that the State and all its administrative agencies such as the Panchayats assist Persons with Disabilities are supported and have access to services. (http://www.disabilityanddevelopmentpartners.org/accesstorehabilitation.htm )

2          Literacy and Education Levels:

Universalisation of Elementary Education (UEE) has been a national goal since Indian Independence. Elementary education in India is defined as the education from Class 1 to VIII. The recent 86^th amendment to the Constitution, which has made elementary education a fundamental right to every citizen, guides the formulation of policies and programmes in this area. (Source: Education for All – National Plan of Action – India http://www.ssa.nic.in)  The national programme of Sarva Siksha Abhiyan (SSA), is launched to achieve the objective of UEE by 2010. SSA aims at providing universal enrolment by the year 2003, five years of quality primary schooling by the year 2007 and eight years of quality elementary education by the year 2010.

These objectives of SSA can only be realized if children with special needs (CWSN or children with disabilities) are also included in the ambit of elementary education. SSA has developed a manual for planning and implementation of Inclusive Education.

(Source: http://www.ssa.nic.in/ssasplneeds.asp)

However, even with all these policies and programme, the current educational system has a long way to go in creating an enabling environment in the inclusion of children with disabilities in schools. Some of the factors responsible for this are - Teaching children with disabilities is not part of the mainstream teacher training programmes, the high student teacher ratio, multi-grade teaching – where a teacher simultaneously manages more than one class at a time, less than 30% of the teachers have received some form of training in addressing the needs of children with disabilities in school, the ability of the teachers to meet the diverse needs of children, over emphasis on addressing the medical needs of children with disabilities such as medical referrals, corrective surgeries and provision of assistive devices. And not enough has been done in developing appropriate teaching/ learning materials and introducing changes in the education systems for children with disabilities to access quality education.

The distribution of persons with disabilities (aged 5 years and above) by level of general education (including illiteracy) was ascertained by the NSSO report in 2002. About 59% disabled persons in rural areas and 40% disabled persons in urban areas were illiterate. Even among disabled literates, significant proportions were educated only up to primary or middle level both in rural and urban areas. Only 7% and 17% disabled persons in rural and urban areas respectively, were educated up to secondary or above secondary levels in 2002.

Providing vocational training is one of the alternatives for making disabled persons secure, to earn their livelihood. Unfortunately in spite of several measures like opening of vocational rehabilitation centers by the Ministry of Labour through the development of VRCs, yet only 1.5% and 3.6% disabled population in rural and urban areas respectively had received vocational training in 2002. The nature of vocational training received also depicts that majority (80% in rural and 75% in urban area) of the vocationally trained disabled persons had received non-engineering, low profile vocational training. Thus majority of them lacked earning capacity through the training. Only 20% and 25% vocational trained disabled persons in rural and urban areas respectively had received engineering training.

Table 3: Educational Status (Figures in Percentage)

Source: NSSO 58th round (Jul-Dec 2002)

Table 4: Usual Activity Status (Figures in Percentage)

Source: NSSO 58th round (Jul-Dec 2002)

4          Disabled Persons, Work Activity Status

The work activity status of disabled persons depicts that about 46% of disabled populations both in rural and urban areas were without any work. Thus in spite of the PWD Act 1995, employment scenario has not changed for the disabled persons. Provision of reservation of 3% jobs in all government services has not changed employment scenario for disabled persons. Only 1.8% and 7.3% disabled persons in rural and urban areas respectively were regular employees in 2002. Even the nature of employment was only in low-level profile of jobs with low-income. Although 3% job reservation in all categories (A, B, C, and D groups – where Group A and B belong to the Senior posts) were stipulated in the PWD Act-1995, yet very few attempts have been made by the state governments to identify the jobs to be reserved for A and B groups in majority of the states. Although identification of jobs for all four categories has been completed by the central government but little attempts have been made to fill up A and B category post either because of non-availability of appropriate persons or because of improper/ unsatisfactory job identification for A and B groups.

The NSSO 2002 survey also depicts decline in proportion of self-employed in non-agricultural sectors in urban areas and in agricultural sector in rural areas during 1991-2002. A significant proportion of the disabled persons were attending domestic work, which does not generate any significant income opportunities rather majority of them are under paid or at best provided basic food requirements. Thus employment scenario for people with disabilities is bleak and requires immediate steps from government and private sectors.

Table 5: Work Activity Status (Figures in Percentage)

Source: NSSO 58th round (Jul-Dec 2002)

Women with disabilities

Disability can have a profound impact on an individual's ability to carry out traditionally expected gender roles, particularly for women. Although both men and women with disabilities would face difficulties in fulfilling their expected gender roles, as long as a disabled man earns a living, his chances of getting married and having a family are much more than those of a disabled woman. A disabled woman is perceived as one who is unable to perform her traditional roles of wife, mother and home-maker because of her disability, even if she may be able to do so in reality. This is largely due to negative attitudes and stereotypes about what disabled women can or cannot do. In addition, because there are few positive role models for women with disabilities, many myths prevail about them. As a result, many disabled women come to consider themselves as 'non-persons, with no rights or privileges to claim, no duties or functions to perform, no aim in life to achieve, no aptitudes to consult or fulfil'.

Women with disabilities generally have less access to rehabilitation services than disabled men. In accordance with the traditional social and cultural norms in village societies, many women do not go out of their houses to seek help for health care, especially if the care-provider is a male. Most rehabilitation personnel, including CBR workers in developing countries are men. Thus even home based services provided by male CBR workers, are out of reach for women with disabilities.

Women with disabilities tend to be more vulnerable to exploitation of various kinds, such as sexual harassment, domestic violence and exploitation in the workplace. According to the 1995 UNDP Human Development Report, women with disabilities are twice as prone to divorce, separation, and violence as able-bodied women. Disabled women also tend to be relatively easy targets of sexual exploitation, particularly if they are mentally retarded. In general, disabled women tend to be in a state of physical, social and economic dependency. This can lead to increased vulnerability to exploitation and violence. Because of the relative isolation and anonymity in which women with disabilities live, the potential for physical and emotional abuse is high. It is estimated that having a disability doubles an individual's likelihood of being assaulted. At the same time, and because of their isolation, women with disabilities are likely to have fewer resources to turn to for help.

 (Addressing Concerns Of Women With Disabilities In CBR, Maya Thomas, M.J. Thomas http://www.worldenable.net/wadbangkok2003/paperthomas.htm)

The Elderly and disabled

The world is going white. A demographic restructuring of the world populace is underway. United Nations estimates put the number of those aged 60 plus at 600 million, i.e. 10 per cent of the world population. The number is expected to approximate two billion by 2050. And a large proportion of senior citizens would live in the developing economies.

According to the NSSO, 58^th round, Dec 2002 survey (statement 5), the highest prevalence of disability (number of disabled persons per 100,000 persons) are among people who are aged 60 plus. The prevalence rate is 6401 in rural areas and 5511 in urban areas. It can be observed that the prevalence rate is more that double the rate when compared with other age groups.

In India, the absence of a safety net for the aged has exacerbated the problem. Traditionally, the joint family took care of the aged. Rapid urbanisation and the exodus of persons from rural to urban areas have created a vicious situation. Slums are areas without housing or healthcare. In the absence of the ability to earn, and without community support, in the form of kinsmen or the extended family, the aged are rendered destitute.

For destitute and old, food, shelter, and medicines are essential. For the solvent and old, the need to feel useful, productive, more and significant. For the old and infirm, professional care for personal tasks such as bathing, eating etc and assistance to perform even daily chores could be required. The problems of old women, single, widowed, or divorced are quite different from those of old men. (Senior citizens deserve a safety net, by Punam Khaira Sidhu, http://www.tribuneindia.com/2004/20041031/edit.htm#2)

Thus, even regarding the older people with disabilities, the plan ensures governments include in the agenda of national policy issues concerning older people with disabilities. For both humanitarian and economic reasons, older people should have the same access to preventive and curative care and rehabilitation as other groups. (The old should be included in national plans, By Terence Perera, http://www.dailymirror.lk/inside/health/030818.html)

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