Volume 3 Issue 3 - February 01, 2005

A systemic neglect

Persons with degenerative disorders, thalassaemia, haemophilia, learning disabilities, leprosy, dwarfism, eunuchs, even the elderly, find themselves isolated and left behind. The Disability Sector, not to speak of the government often ignores persons with such disabilities. Sakshi Broota examines the ramifications of this neglect.

The disability movement in India has had active participation of different disability groups from different parts of the country. Issues like the inclusion of a disability question in the Census 2001, access to public buildings and voting rights for disabled people were concerns that brought together people from all walks of life. And yet, there are people with certain disabilities who seem to have been left behind by the planners, policy makers, government machinery and even by the larger disability movement.

Disabilities, such as hearing impairments, are often neglected when making policy decisionsWhile they provide tremendous support to various advocacy campaigns, their own individual voices often get lost in the crowd. It is these people, belonging to categories of neglected disabilities, who remain unseen and unheard, living in severely handicapping conditions, who need special focus of the government as well as non-governmental organisations.

Though the plans/ policies/ schemes are meant to reach all categories of disabled people, especially those who are most in need, sustained effort is needed to include girls and women with disabilities and those living in difficult circumstances. The nation cannot afford to move forward leaving behind millions untouched by the progress.

Neglected categories of disability

Various impairments and medical conditions get compounded due to a lack of services and indifferent attitudes towards disabled people.

Persons with degenerative disorders like muscular dystrophy still find it difficult to reach policy makers. For them, and their families, it is a daily struggle to receive the most basic medical facilities. Children with specific syndromes have unique multiple problems and their formative years of life revolve around hospitals for diagnosis.

Lack of adequate, timely and affordable medical intervention compounds or even leads to disability for many people. Those with thalassaemia run from pillar to post to get the required blood from blood banks which usually have a short supply. People with haemophilia face a life-long struggle for injections of anti-hemophilia factor for blood clotting.

Children with learning disabilities like dyslexia, dyscalculia, dysgraphia, dyspraxia or with Attention Deficit Disorder (ADD) and Attention Deficit/Hyperactivity Disorder (ADHD) often become misfits in schools and eventually drop out of the education system. Lack of awareness, inappropriate teaching methods and multiple languages used in the academic situation makes it difficult to identify, assess and intervene. While labelling children with a disability is a debatable issue and needs utmost care and professionalism, identification of children and understanding their challenges is essential to ensure systematic intervention. Moreover, there are no services for gifted learners. Even with higher IQ, children might not be able to adjust to the classroom, leading to difficulties in learning, loneliness and emotional setbacks.

Similarly, unless children with Autism Spectrum Disorders (ASD) are recognised, the awareness about their needs and rights will remain minimum. Children with autism are often assumed to have intellectual impairment. Teachers in both special schools as well as mainstream schools do not feel equipped to teach them.

Even within the disability sector, people with intellectual impairment do not have a voice. They remain an isolated group. A look around us clearly shows that despite legislative rights, they have the least access to education and employment. Research too supports this reality. Similarly, even with minimum apparent barriers, people with hearing impairment seem to be left behind in educational opportunities which leads to limited opportunities for suitable employment and financial independence. Communication barriers – in these times of instant communication and technological revolutions – cut them off from the rest of the world.

The barriers in communication are manifold for people with deaf-blindness. Very few people in the disability sector itself would have had the opportunity to interact with people with deaf-blindness. Workshops, seminars, celebrations, events and many other interactive forums in the sector do not have ways to include those with deaf-blindness.

Eunuchs are isolated into a separate world. They are denied basic human dignity and rights, and are exploited and shunned by society. Despite provisions under The Disability Act, 1995, people with leprosy continue to live in separate communities of their own. People with dwarfism have limited livelihood options leading to financial hardships. Similarly, ignorance or incomplete information about HIV/AIDS leads to non-acceptance of people affected with HIV in the society, though in some countries, this group is covered under legislations for non-discrimination of disabled people.

Elderly people require specific medical attention, aids and assistive devices, social security, and the reassurance that they are cared for in our country. After contributing actively to the nation’s development, elderly people often get isolated into four walls completely dependent on family members for basic day-to-day activities. Even simple arthritis could restrict a person from going to the inaccessible bank, market place, post office, cinema house, garden, restaurant, and so on. Many elderly people also require psychiatric or psychological intervention.

Infact, a large percentage of Indian population is affected by mental illness. Children/ youth with mental illness face setbacks in their education. They find it impossible to get a suitable job. The number of psychiatrists and other mental health professionals are hardly adequate to meet the growing needs for mental health care in the country. The homes for people with mental illness are very few and are often reported to be unhygienic, overcrowded and under-staffed. Many people institutionalised in homes for rehabilitation continue to live there long after their treatment is over because they have no family or rehabilitation facility to turn to.

These and many others remain most marginalised groups of disabled people today.

Other neglected aspects

It is a known fact that services for disabled people are concentrated in big cities. In fact, people with disabilities and their families who live in regions affected by terrorism or natural calamity have no access to facilities or even to any information regarding their rights. Disabled women and children, who have no family or community support, living, begging, exploited daily on the streets of big towns and cities too are denied basic human rights. Efforts have been made by individuals to organise services in tribal, rural and slum areas or in difficult geographical terrains to reach those most affected by poverty. However, these efforts are few and their reach is limited.

The bloodshed in Jammu and Kashmir has left many traumatised. The Tribune reported on September 17, 2003 that as per the official record kept in Psychiatric Hospital, Srinagar, last year, there were 48,000 persons in the state who had suffered deep psychological wounds. This year, 36,000 more had been added to this number, while in 1980, they were a little over 100. The patients included families of the victims of militants’ fire, relatives of the slain militants and security personnel in stress. Another report in The Hindustan Times, dated July 25, 2003 also stated that about sixty per cent patients who came to the OPD were women and the hospital was able to treat only 5 per cent of the total mentally ill in Kashmir. Moreover, the case histories of 65 per cent mothers with children having intellectual impairment indicate acute pre-natal stress as per the statistics available at the Composite Regional Centre in Srinagar. However, the basic facilities in the region remain dismal with hardly any educational or employment opportunities for them. Even basic medical facilities are scarce. To add to the misery, till today, landmines in the region are disabling the civilians.

Talking of creation of impairment, millions of people in the country are developing bone deformities due to excessive consumption of fluoride-laden water, causing Skeletal Fluorosis. A recently-concluded WHO-UNICEF sponsored study on the country's water supply and sanitation reported that as many as 200 districts in the country suffered from high fluoride concentration in ground water. Spread over 17 states and affecting a population of some 25 million, another 66 million were described as a ‘population at risk’.

In addition, needless to say, all the concerns of disabled people get multiplied for disabled women. The Pioneer reported on November 14, 2003 that a 14 year old mentally challenged girl died on October 24, 2003, after being gang raped, begging for food, collapsing in pain, and after being ignored by passers-by and even by doctors. Clearly this is not an isolated case. Disabled women, even today are most vulnerable to abuse and exploitation. They have minimum access to services in both government as well as non-governmental organisations working with disabled people or those working for women’s rights.

Shared concerns

Though each of the above mentioned group has specific challenges, many of them share similar concerns. For one, the data regarding the number of people having these impairments and living in difficult circumstances is not known. NGOs working with them provide estimates which are often not recognised by the Government.

Due to lack of data, allocation of funds gets restricted, severely affecting the services essential for them. The existing services are mostly pioneering work of individuals with disabilities or their parents, dependent on donations.

Medical facilities are inadequate, inaccessible and extremely expensive. For many disabled people and their families, a visit to the hospital or even to a dentist for a simple tooth problem highlights the urgent need for accessible premises and communication assistance. Medical professionals need to know more about the abilities and disabilities created by various impairments and the societal barriers. This is essential because many a times, the doctors are the first or sometimes even the last professional help that parents seek for their disabled child. Specific impairment related diagnosis, treatment and rehabilitation as well as general medical intervention remains inadequate. Lack of financial assistance and medical insurance does not ease the situation.

Education, employment, communication, access to transport and to built environment all pose barriers for them.

It is clear that there is lack of flow of information from disabled people to policy makers, media professionals and doctors. Similarly, disabled people face a whole range of barriers in accessing general information or that related to their disability. Publicity of disability related information in accessible formats is not a priority in the sector, especially the government.

The lack of awareness is evident amongst various professionals too. There is a need to include concerns of neglected disability groups in the curriculum of all training/ teaching institutions related to education, health, rehabilitation, technology, architecture, design, management, business, law, finance, etc.

Many disability groups have for long expressed the need to be included under the definition of disability in order to come under the purview of The Disability Act, 1995. Some of them do get included for provisions but it is merely by default. Infact, a Public Interest Litigation (PIL) was filed before the Delhi High Court in October 2003, seeking directions to various Government agencies to extend disability benefits to persons with Autism (The Times of India, October 24, 2003). Similarly, Maruguchi Sangham, an association of dwarfs of Hyderabad demanded that in view of their disadvantageous physical condition, the dwarfs should be included within The Disability Act, 1995 (The Pioneer, August 30, 2003).

Related to this is the issue of disability certificates that remains complex, inaccessible, inadequate and dehumanising for most disabled people. Many government hospitals do not have medical boards to certify disability. Many do not have requisite staff to certify those with intellectual impairment. In addition, with no standardised procedures, those with cerebral palsy are usually certified under locomotor disability and those with Autism are certified under mental disability, for whom the certificate is needed for appointment of a guardian. There are no provisions for certification of many other forms of disability, as these are not covered under any Act. Without proper recognition, they are denied education, loans, employment, guardianship, and various other rights under the National Trust Act for Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disability, 1999 and The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995. Clubbing all disabilities into locomotor, visual, hearing or intellectual impairment can lead to further damage to the development of the child due to incomplete or inaccurate understanding of her/his specific needs. Denying them recognition means denying ‘equal opportunities, protection of rights and full participation’ to the most marginalised citizens of the country while recognising them provides protection against discrimination and access to legal aid.

Time to pause

When the government should be actively focussing on the needs of citizens with neglected disabilities and supporting the organisations working with them, it seems to be adding to their problems with complicated procedures for getting disability certifictates, loans, guardianship rights, etc.

The need of the hour is to join hands for active lobbying with the government for these basic human rights. Organisations working with neglected disabilities must take on sustained and result-oriented advocacy to bring about long-term changes.

The disability movement in the country has received tremendous support from the media and the judiciary. Landmark judgements are slowly changing the face of the country towards inclusion of disabled people in all facets of life. This support from all quarters needs to be harnessed further to build pressure to ensure that long-awaited policy initiatives are introduced for the neglected sections of disabled people. Accurate data on the number of people affected with various neglected disabilities and on the services available for them is required. Orientation and training of all concerned professionals and of those working in other social sectors would also strengthen the disability movement.

A crucial emerging need seems to be that for publicity of the facilities and rights of disabled citizens in a regular, systematic manner using mass media, films, street plays, etc in local languages. Budgets in all concerned Ministries need to be allocated for the implementation of the provisions of The Disability Act, 1995, as well as for their publicity.

While we stride ahead step by step towards equal opportunities and full participation of disabled people, let us not leave behind those who are most in need. Let us give a voice to their concerns too. Let us pause just for a minute to ensure that ‘all’ get included.

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