Home Essay/Articles SPECIAL ARTICLES OF YOJNA MAGAZINE (JUNE)
SPECIAL ARTICLES OF YOJNA MAGAZINE (JUNE)
Saturday, 27 July 2013 08:10


GIST OF YOJANA

 

UNDERSTANDING DIDSABILITY

Sometimes a word is understood differently by people. More so, if the word is meant to describe an aspect of human condition. The culture, prejudices and environment have a great bearing on the meaning of such words. The words ‘handicapped’, ‘disabled’, ‘differently abled’, ‘retarded’ have various meanings and carry the potential for prejudicial stereotypes, discrimination and abuse. Disability may relate to body or mind. Also disability can be of a short term or long term nature. Some disabilities may be of permanent nature.

The most acceptable and dynamic definition of disability is provided in the UN Convention on Rights of Persons with Disabilities (UNCRPD) which states that “Persons with Disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others.”

Care and consideration for the sick, elderly and disabled has always been a part of Indian culture and tradition. However, in earlier times, disability was considered as a punishment for acts committed in earlier lives, and the attitude towards persons with disabilities (PwDs) has been one of charity. It is now being accepted that the major cause for disabilities is deficiencies in the management of the environment in which we live and that if we manage the environment better, then disabilities can be reduced.

Though the Constitution of India guarantees equality of all citizens, persons with disabilities have been, in reality, facing stigma, discrimination and neglect due to socio-psychological and cultural reasons. Disability when compounded with discrimination doubles the quantum of disability.

There is a wide spread underestimation of the abilities and potential of persons with disabilities due to general public perception and prejudices, thereby creating a vicious cycle of under achievement. This in turn results in inferiority complex among them which further harms their growth. It has taken a long period of time to educate ourselves to demystify the meaning of disability and fight myths and misconceptions of disability. We need to keep these new ideas alive everyday so that the old negative attitudes and perceptions do not assert themselves.

Disability was earlier considered to be a medical problem to be dealt with by doctors only. Today, the medical model is being replaced by the developmental and sociological model. Education, employment, access to buildings, transport and information systems have, in the past, been difficult for persons with disabilities to access. The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995 (PwD Act) and the UNCRPD have legislated on making these available to persons with disabilities. It is, however, the action by activists that have pushed governments and the societies to guarantee various rights to ensure equal opportunity to persons with disabilities in all human endeavours.

 


DISABILITY AS A HUMAN RIGHTS ISSUE: INDIA’S‘INVISIBLE MINORITY’ IN THE POLICY REALM

The World Report on Disability published by the World Health Organisation (WHO) and the World Bank says that 15 percent of the world’s population or 1 billion people live with a disability. If we go by the 15 percent figure, India should be home to more than 150 million people with disabilities! Even if we take a conservative 7 -10 percent, India is home to at least 70-100 million people with disabilities. This is a huge section of our population. And yet, we hardly see them in the mainstream. But this doesn’t mean that these millions are not there, among us. It is just that we as a country have neglected to include them in the mainstream.


DISABILITY IN THE 12TH FIVE YEAR PLAN

Disability in the 12th Five Year Plan: Though the 11th Plan had a very substantial mention of disability, its implementation was extremely abysmal. The primary reason for the poor implementation was the fact that although disability was mentioned as a cross-cutting issue with clear mandates for several Ministries, the concerned section was hidden away as a part of the larger chapter on Social Justice. The result was that when NCPEDP filed Right to Information (RT!) applications with some 20 Ministries in 2010-11, none of the Ministries or Departments were even aware of the section on disability in the 11th Plan. They did not have any Disability Policy nor any budget for disability issues.

Learning from this experience, it was essential that in the 12th Plan disability was included in all relevant chapters of the document. In 2011, when the Planning Commission was setting up Steering Committees to formulate the 12th Plan, NCPEDP and DRG advocated for the inclusion of people with disabilities and disability experts in all relevant Committees in addition to the Steering Committee on disability. And for the first time in the history of the nation, people with disabilities and experts were made part of the Steering Committee on Labour, Transport, Health, Women and Child Rights, Housing & Poverty Alleviation, Science & Technology, Youth, Literacy and so on. It was hoped that with this, all relevant chapters would have adequate mention of disability. Unfortunately, the 12th Plan document that was unveiled recently did not quite reflect this. In fact, it seems that the 11th Plan had a much more rights based approach towards disability and had more for people with disabilities than the 12th Plan.


NATIONAL TRUST ACT

The National Trust Act was e acted on 30 December, 1999 as a ‘Gift of the Millennium’ for the welfare of persons with developmental disabilities such as Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities. The Act was Government of India’s answer to the perennial and universal question by parents-”What happens to my child when I am no more?” The Act itself is a good example of effective advocacy by parents and families of people with developmental disabilities.

The Act and the Question are seemingly based on the incapacity of the disabled person. They reflect the thinking, a traditional one, of the requirement primarily 0f protection and care. However interestingly, all the Object of the Act revolve around the understanding of Community Participation and Inclusion. The National Trust Act can be therefore, looked upon as an instrument for appointment or in difficult cases removing Legal Guardians or it can be use as an effective vehicle for skill development, capacity building and inclusion of people with developmental disabilities.


HUMAN DEVELOPMENT REPORT-2013

Almost half a century ago, the philosopher Thomas Nagel published a famous paper called “What Is It Like to Be a Bat?” The question I want to ask is: what is it like to be a human being? As it happens, Tom Nagel’s insightful paper in The Philosophical Review was also really about human beings, and only marginally about bats. Among other points, Nagel expressed deep scepticism about the temptation of observational scientists to identify the experience of being a bat-or similarly, a human being-with the associated physical phenomena in the brain and elsewhere in the body that are within easy reach of outside inspection. The sense of being a bat or a human can hardly be seen as just having certain twitches in the brain and of the body. The complexity of the former cannot be resolved by the easier tractability of the latter (tempting though it may be to do just that).

The cutting edge of the human development approach is also based on a distinction- but of a rather different kind from Nagel’s basic epistemological contrast. The approach that Mahbub ul Haq pioneered through the series of Human Development Reports which began in 1990 is that between, on the one hand, the difficult problem of assessing the richness of human lives, including the freedoms that human beings have reason to value, and on the other, the much easier exercise of keeping track of incomes and other external resources that persons-or nations-happen to have. Gross domestic product (GDP) is much easier to see and measure than the quality of human life that people have. But human well-being and freedom, and their connection with fairness and justice in the world, cannot be reduced simply to the measurement of GDP and its growth rate, as many people are tempted to do.

The intrinsic complexity of human development is important to acknowledge, partly because we should not be side-tracked into changing the question: that was the central point that moved Mahbub ul Haq’s bold initiative to supplement-and to some extent supplant-GDP. But along with that came a more difficult point, which is also an inescapable part of what has come to be called “the human development approach.” We may, for the sake of convenience, use many simple indicators of human development, such as the HDI, based on only three variables with a very simple rule for weighting them-but the quest cannot end there. We should not spurn workable and useful shortcuts-the HDI may tell us a lot more about human quality of! If  than does the GDP-but nor should we be entirely satisfied with the immediate gain captured in these shortcuts in a world of continuous practice. Assessing the quality of life is a much more complex exercise than what can be captured through only one number, no matter how judicious is the selection of variables to be included, and the choice of the procedure of weighting.

The recognition of complexity has other important implications as well. The crucial role of public reasoning, which the present Human Development Report particularly emphasizes, arises partly from the recognition of this complexity. Only the wearer may know where the shoe pinches, but pinch avoiding arrangements cannot be effectively undertaken without giving voice to the people and giving them extensive opportunities for public discussion. The importance of various elements in evaluating well-being and freedom of people can be adequately appreciated and assessed only through persistent dialogue among the population, with an impact on the making of public policy. The political significance of such initiatives as the so-called Arab Spring, and mass movements elsewhere in the world, is matched by the epistemic importance of people expressing themselves, in dialogue with others, on what ails their lives and what injustices they want to remove. There is much to discuss-with each other and with the public servants that make policy.

The dialogic responsibilities, when properly appreciated across the lines of governance, must also include representing the interest of the people who are not here to express their concerns in their own voice. Human development cannot be indifferent to future generations just because they are not here-yet. But human beings do have the capacity to think about others, and their lives, and the art of responsible and accountable politics is to broaden dialogues from narrowly self-centered concerns to the broader social understanding of the importance of the needs and freedoms of people in the future as well as today. This is not a matter of simply including those concerns within one single indicator-for example, by overcrowding the already heavily loaded HDI (which stands, in any case, only for current wellbeing and freedom)-but it certainly is a matter of making sure that the discussions of human  development include those other concerns. The Human Development Reports can continue to contribute to this broadening through explication as well as presenting tables of relevant information. The human development approach is a major advance in the difficult exercise of understanding the successes and deprivations of human lives, and in appreciating the importance of reflection and dialogue, and through that advancing fairness and justice in the world. We may be much like bats in not being readily accessible to the measuring rod of the impatient observational scientist, but we are also capable of thinking and talking about the many-sided nature of our lives and those of others today and tomorrow- in ways that may not be readily available to bats. Being a human being is both like being a bat and very unlike it.

EDUCATION OF CHILDREN WITH DISABILITIES: NEED FOR GREATER REFLECTION

In recent years changes in legislation, as reflected in the Persons with Disabilities Act and the Right to Education Act, have provided a much needed focus on the education of children with disabilities. However, conflicting goals and a lack of clarity still affect young people’s experiences and outcomes of education.

While educational enrolment figures for children with disabilities remain highly contested, with figures ranging from less than 4 per cent to 67.5 per cent attending school, there exclusion from education is of concern. NSSO (2003) figures indicate that only 45 per cent of people with disabilities are literate in comparison to 65 per cent of the total population. Progression and retention rates remain dismal. World Bank (2007) noted that only about 4 per cent of children with disabilities receive more than 8 years of schooling, and they are five times more likely to be out of school than children belonging to scheduled castes or scheduled tribes.

Even in states with good overall educational indicators, such as Kerala and Tamil Nadu their situation is far from adequate. This raises the question about what is amiss in a context where some commentators have argued has the most progressive disability policy frameworks.

Over the years, government has funded special schools through grants-in-aids (under the Ministry of Social Justice and Empowerment) and integration in mainstream schools through programmes, such as the Integrated Education for Disabled Children (under the Ministry of Human Resource and Development). An important shift was undertaken in the Sarv Shiksha Abhiyn (2007: 1), which adopted a ‘zero rejection policy’ irrespective of the kind, category and degree of disability. The aim was to teach a child in an environment suited to his/hers learning needs, which might include special schools, Education Guarantee Scheme, Alternative and Innovative Education or even home-based education. While this multi-option delivery model could be immensely useful a number of assumptions underpinning the government’s discourse need to be challenged.

In policies and practice, deterministic viewpoints about children’s ability remain largely unchallenged and naive statements about where to educate children with disabilities exist. For instance, the MHRD, 2003 document, provides a list of children who can be taught in the mainstream, and the important variables for doing so are IQ score and the nature of impairment. Furthermore, the

overarching emphasis in such a scenario is on identification, through assessment teams “comprising of a psychologist, a doctor and a special educator’ will determine whether the child should be directly enrolled into a ‘normal’ school”’ (as noted in the Tenth Five Year plan). Noticeable here is not only the absence of the views and preferences of the child and parents, but there is also a complete disregard of the fact that such objectification and medicalization of disability is highly limiting.

 


PORTRAYAL OF DISABILITY IN LITERATURE AND CINEMA

Disability is a major concern of our society. The Governmental and Non-Governmental sectors have been making efforts to fight it but it still remains a big challenge. We often hear about the pervasive presence of disability among people through the media which is an important source to cultivate right attitude towards disability and create awareness about it among people. Film is surely a very important medium towards this end. It would be interesting and pertinent to know as to how disability gets portrayed in cinema. This becomes all the more important because of the at large wide ranging impact of cinema on the society and public.

Our mythology and puranas also do contain examples of differently-abled individuals like Dhritrashtra, Manthara, Ashtaavakra etc. Disability can be either inborn or a consequence of some unfortunate incident in life such as disease or accident. Films too have given space to representation of disability in various artistic forms.

Only recently a film by Anurag Basu Barfi was released. It also became the official entry of India for Oscars. The protagonist Ranbeer Kapur playing a deaf and dumb man is simultaneously attracted to two girls, one of them being a physically challenged girl over the other one. But, why? It’s indeed a thought provoking question. Priyanka Chopra was much admired for her role as a mentally challenged girl, world apart from the glitter and glamour. It is significant that when a star of Bollywood plays such a character he is thought of displaying an exemplary courage for an artist. For instance, Sanjeev Kumar was much appreciated for playing the disabled in the legendary film Sholay although as we do know that his disability was incidental rather than being from birth. Likewise in the film Koi Mil Gaya (2003) Hrithik Roshan played a mentally challenged whose mental age was that of a eight year child although his biological age was twenty years. This movie was meant for the children and carried little social message yet, it proved that skillful use of creativity can make for a commercial hit as well.

The Oscar winning movie The King s Speech is a classic example of a beautiful portrayal of disability. The protagonist, the king stammers and becomes a victim of the jibes of his family. He gradually loses his confidence and finds it a mammoth challenge to speak from public platforms.

The care and concern of his wife and the acumen of his trainer revives his confidence and ultimately he succeeds in delivering his speech. A similar problem was portrayed in the movie My Name Is Khan. Mani Ratnam’s movie Anjali and Mai Aisa Hee Hoon reveal the loneliness of those who have been forced to the periphery. The father in Anjali conceals the inborn disability of his daughter from his wife to spare his wife from a possible ordeal. The remake of I Am Sam by the name Mai Aisa Hee Hoon became a huge success.

Hindi cinema has perhaps the largest audience in the world and it also claims to reflect the society. Deepika Padukone in the 2009 movie Lafangey Parindey plays the character of a dancer who loses her eyes prior to an important competition. The sight-disabled girl loses confidence in her abilities but the hero Neel Nitin Mukesh trains her in such a manner that she regains her enthusiasm and confidence. The movie strongly conveys the message that no success is too high for the disabled to achieve.

Sanjay Leela Bhansali, the acclaimed Director, has used the medium of cinema to present this subject in an aesthetic manner. In Khamoshi i(1996) the protagonist is deaf and dumb. Nana Patekar and Seema Biswas have played the touching role of a couple. Sign Language used in the movie becomes all the more expressive in the context of deep sensitivities of the disabled people. While Patekar and Biswas are explicit about their disgust for music their daughter, on the contrary, is all about music. In a very touching scene the film shows the physically challenged being subjected to insult. Another such movie dwelling on this subject is Black (2005) in which the protagonist, Rani Mukherjee is deaf, dumb and blind. She gives voice to the deep void and the resounding silence of a deaf, dumb and blind person who becomes violent in the absence of a meaningful outlet for her feelings. Later on she meets one Debraj Sahay who helps her out of the dark abyss. The third such movie was Guzarish (2010) which dwelt on the extremely sensitive issue of euthanasia through the story of the protagonist Hrithik Roshan suffering from quadriplegia that renders him virtually dead, a total invalid.

Everyone has a right to dream, whether abled or differently abled. Iqbal (2005) of Nagesh Kukunoor asserts the victory of such undying spirit. The dumb boy, Iqbal aspires to be a bowler in the Indian Cricket Team. He suffers discrimination but triumphs over all odds under the able guidance of his coach Naseeruddin Shah to realize his dream. The best thing about the movie is that it does not view disability with pity or sympathy rather it views it as a challenge which leads to victory if faced bravely. One can hardly forget a similar character of Lagaan who makes a valuable contribution in the ultimate victory surmounting formidable challenges. But there are other movies that portray disability in a superficial or even derogatory manner in an attempt to create slapstick humour. Kader Khan’s Mujhse Shaadi Karogi is one such example which incites base humour at the expense of the debilitating disabilities of differently abled.

Taare Zameen Par(2007) is a child centric movie but devoid of the fantasy element of Koi Mil Gaya. It is a sensitive movie based on deep insight disability that is subject matter of the movie is not apparent or easily visible. Instead it is buried deep in human brain. The child, Ishaan Shrivastava suffers from dyslexia that makes the reading of the alphabets a paramount difficulty. Although this makes the progress in academics difficult for the child yet his love and ability for painting makes him unique and capable of working wonders in this particular field. But the typical parents fail to perceive his difficulty as well as his unique talent and consider him a dull boy and punish him by putting him in a Boarding School. This punishment makes a deep scar on the sensitive mind of the child. But, then comes the Midas touch of Ramshankar Nikumb (Amir Khan) who not only fathoms the exact nature of his problem but discovers his unique talent as well. He gradually chisels him to bring out the best in him. This movie has a very serious message to deliver. Education has to be child specific and it ought to bring out the best in the child rather than reducing him to a machine. The much acclaimed film Pa (2009) brought the disease Progeria into public consciousness. For a person afflicted with this disease the brain and the body grow at a differential rate. Amitabh Bachchan has played the role of a boy, Auro, suffering from progeria who is loved by his cohorts and school mates. The primary objective of the movie is not to popularize Progeria rather than to evoke the latent love of the father towards his child.

Unlike literature in which we do find characters like Gandhari who wrapped a cloth round her eyes in her attempt to completely identify with her blind husband, Hindi Cinema depicts disability affecting the marital relationship primarily in two ways. In movies like Pati Patni (1966), Zameen Asman (1972), Kasauti (1974), Wakeel Babu (1983), Qat! (1986), Waada (2006) etc. the marital relationship crumbles. However, in other films, alternatives are explored or cure for disability is found. The climax of a 1972 movie Anurag that shows the cornea transplant as an answer to blindness is a memorable one. The love relationship with Vinod Mehra is sought to be redeemed in this fashion. Similar remedies have been sought to be projected in other movies like Jheel Ke Uss Paar (1973), Sunayna (1979), Neelkamal (1984) and Humko Tumse Pyar Hai (2006) etc. There are numerous such movies like Saathi (1968), Khamoshi (1969), Khilauna (1970) where cooperation and love are shown to smoothen the relationship in the context of disability.

While talking about movies dwelling upon disabilities the story would rather be incomplete without the mention of classic movie Dosti (1964) in which the two differently abled friends complement each other with the gift of music which nature has bestowed upon them. Koshish (1972) stars the inimitable Sanjeev Kumar and Jaya Bhaduri who are dumb but they shine with their brilliant acting on screen. The message too was a forceful one. Differently abled people can manage to run their lives on their own without the aid, props and sympathy of the common lot but simultaneously the movie becomes heart rending when it shows the deaf and dumb parents losing their child because they were unable to hear the groans of their child. In Kinara (1977) GuIzar once again reveals his sensitivity towards the disabled in a potent fashion. Naseeruddin Shah in plays the role of a fiercely independent differently abled character in Sparsh. In the same league comes Sadma (1983) with its unique climax. Kamal Hasan and Sridevi leave an indelible impression on the viewers. The movie projects the differently abled as special children of God.

DIFFERENT APPROACHES TO ASKING ABOUT DISABILITY IN CENSUS AND SURVEYS

The UN Statistics Division has formed the Washington City Group on Disability Statistics, which is focused on measurement of disability in national censuses and surveys (website is http://www.cdc.gov/ nchs/ citygroup.htrn). There are broadly four methods of trying to identify disability in surveys, which are:

Diagnostic: An example of this approach would be “Is anyone in house deaf?”. This method tends to generate the lowest prevalence estimates among those now available and is the one used in India for both NSS and census

Activities of daily living (ADL): This method relies on a functional approach based on common activities of individuals. An example of this approach would be “Do you have trouble bathing or dressing yourself?”. This yields higher prevalence estimates than the diagnostic approach, but can be very culturally sensitive for purposes of cross-country comparison (e.g., putting on a sari is a more demanding task than putting on a skirt).

Instrumental ADL (IADL): This asks about more complex functionings, e.g., “Do you have trouble maintaining the household ?”. This tends to yield the highest rates of disability, but can more often include those with chronic illness who may not otherwise be classified as disabled.

Participatory/social roles - This method is underpinned by a social model of disability. An example would be “Do you have a mental or physical impairment that limits the type/amount of work you can do?”. This would tend to yield prevalence estimates between diagnostic and ADLI IADL approaches.

PSYCHO-SOCIAL DISABILITY

The psycho-social health and disability spectrum, when situated in the context of our everyday lives, is a variety of individual experiences. The experienced disability is a measure of the impairment and the social barriers faced by a person. This range of experiences could extend from feeling well, to feeling distress, disturbance, to extreme states. A person may feel disabled when looping through this spectrum at different times in their lives.

Many people going through psychological, psychosocial states may not require medical interventions, and may well be able to take care of themselves in their local settings; Though as human beings, all would need excellent community, family and social support, and measures for remaining included in society. Just like the blind or the deaf, not all would need the full range of disability measures, and some may not even see themselves as disabled. Finally, a few, among those with psychosocial disabilities, may need high support. They may or may not experience themselves as disabled depending on the available support measures and the quality of their lives.

None of these scenarios, including needing high support, is peculiar to people living with mental illness. In every constituency of people with disabilities, there would be a few who require high support. The need for high support is a measure not only of the impairment, but also of the social barriers as experienced by that person. So for example, a blind person who is poor and homeless needs a degree of support much higher than a blind person who belongs to upper class and other elite cultural backgrounds. A deaf person who is also speech impaired or sensory impaired in other ways, and living in an institution, may require higher degree of support than a person with multiple disabilities who is living and cared for at home.

DO YOU KNOW?

What is the number of persons with disabilities in India?

According to Census 2001, there were 2.19 Crore persons with disabilities in India who constituted 2.13 percent of the total population. Out of the total population of persons with disabilities, 1.26 Crore are male and 0.93 Cores are female. This includes persons with visual, hearing, speech, locomotor and mental disabilities. The Census data shows that 75 percent of persons with disabilities lived in rural areas, 49 percent are literate and only 34 percent are employed. Data collected in 2002 by the National Sample Survey Organization, indicated that the number of persons with disabilities was 1.85 Crore, with a disability-wise break up which was significantly different from the Census 2001 data, as given in the table below, due to difference in coverage and definitions used for collection of data. The estimated population of persons with disabilities in 2008, projected on the basis of figures of the last Census, is 2.44 Crore.

There is significant difference in the disability statistics provided by Census 2001 and the sample survey of National Sample Survey Organization (NSSO) in 2002. The variation is primarily due to the difference in the criteria for defining disability adopted by both the organizations. The definitions are also at variance with those mentioned in the Persons with Disabilities Act (PwD Act) 1995. Further, all the disabilities mentioned in the PwD Act were not covered in the Census 2001. Therefore, the Census data of 2001 does not reflect the true picture of disabilities in the country.

With a view to have more credible enumeration of Persons with Disabilities in Census 20 11, the matter was taken up with the Registrar General of India (RGI). The Ministry of Social Justice and empowerment proposed to include all the 7 types of disabilities mentioned in the PwD Act for enumeration in the Census, 2011 and also suggested a Household Schedule as well as simple and comprehensive definitions of various disabilities for canvassing during Census 2011. According to the in Census 2011, the following disabilities have been covered for enumeration: –

(i) In Seeing

(ii) In Speech

(iii) In, Hearing

(iv) In Movement

(v) Mental Retardation

(vi) Mental Illness

(vii) Multiple Disability

(viii) Any other

What is Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) law and proposed amendments in this law?

A meeting to launch the Asian and Pacific Decade of Disabled Persons 1993-2002, convened by the Economic and Social Commission for Asia and Pacific (ESCAP), was held in Beijing in December, 1992. The Proclamation on the Full Participation and Equality of People with Disabilities in the Asian and Pacific Region was adopted in this meeting, to which India is a signatory. The Central Government enacted The Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation Act), 1995 to implement this proclamation.

The PwD Act defines “disability” as blindness, low vision, hearing impairment, locomotor disability, mental retardation mental illness, and leprosy-cured. It defines persons with disability as those who have a minimum disability of 40%, as certified by a medical authority. It provides for education, rehabilitation, employment, non-discrimination and social security for persons with disabilities.

The PwD Act 1995 is now over 15 years old. Keeping in view the developments taking place in disability sector over the last 15 years and to harmonize the provisions of PwD Act with United Nations Convention on the Rights for Persons with Disabilities (UNCRPD) and provisions of other legislations on the subject, it was proposed to amend the present Act.

Extensive consultations with various stakeholders including State Governments, NGOs, disabled persons’ organizations and experts have been carried out and deliberations were compiled and placed before the Central Coordination Committee (CCC), which is a statutory body under Section 3 of the PwD Act and is chaired by Minister, Social Justice and Empowerment. It was decided. To have wider consultation with the stakeholders before finilising the draft for which the Ministry constituted a Committee on 30 April, 2010 under the Chairpersonship of Dr. Sudha Kaul, Vice Chairperson, Indian Institute of Cerebral Palsy, Kolkata.

The Committee comprised of experts in disability Sector and representatives of the Stakeholders including State Governments, Central Ministries, civil society organizations etc. The committee has submitted draft legislation on the Rights of Persons with Disabilities to the Ministry.

The Draft Rights of Persons with Disabilities Bill, 2012 has been uploaded on the Ministry’s website (http://socialjustice.nic.in) pdf/draftpwd l2.pdf). The Ministry will shortly be consulting States, in whose domain ‘disability’ figure under the constitutional scheme, on the proposed Bill.


INEQUALITY HOLDS BACK HUMAN DEVELOPMENT

HDRO research using Human Development Index (HDI) data yields robust findings of an inverse relationship between inequality and subsequent improvement in human development, driven mostly by inequality in health and education rather than in income.

Using data on 132 countries for 2012, regression analysis showed the effects of multidimensional inequality (measured as the loss in the Inequality-adjusted Human Development Index relative to the HDI) on the HDI and each of its components (health, education and income) due to four explanatory variables: overall inequality in human development, inequality in life expectancy, inequality in educational attainment and inequality in income per capita.

A different regression was used for each explanatory variable, and all regressions included dummy variables to control for the level of human development (low, medium, high and very high). Overall inequality in human development, inequality in life expectancy and inequality in educational attainment showed a highly statistically significant (at the 1 % level) negative correlation, but inequality in income per capita showed no correlation. Results were robust to different specifications, including grouping countries with low and medium human development on the one side and countries with high and very high human development on the other.

WOMEN WITH DISABILITIES: GENDERED IMPAIRMENT

India is a vast country with a population of more than one billion and nearly 70 million persons (based on the projections made by various international agencies such as the United Nations, WHO and World Bank) with disabilities. About 48 percent of them are women. In India women have been struggling to get their rights and women with disability are toiling far behind. This paper attempts to recount the concerns of women with disabilities. It is an attempt to demonstrate the dual peril faced by women with disabilities- one on account of their disability and other on account of their gender.

The disabled are deprived of all opportunities for social and economic development. The basic facilities like health, education and employment are denied to them. The State infrastructure is grossly inadequate and ill functioning where disabled are concerned. It is estimated that 40 million of more than 100 million children out of school have disabilities. Around 70 percent of the disabled are unemployed. Millions are in the verge of collapsing due to severe disabilities. People with physical disabilities at least get noticed, but the others with mental illness are just written off. Along with the physical problems they also bear the brunt of social ostracism and stigma.

 


IF NUMBERS MATTER: ACTUAL VS. ESTIMATED DATA

The NSSO 58th round was first endeavor by the Government of India to bring out data regarding persons with disability and also a gendered disaggregation. According to that, out of the 18.49 million disabled people, 10.89 million are males and 7.56 million were females, which constitutes of around 59 percent males and 49 percent males and females respectively. Estimates from this round show that on an average about 21 per thousand populations are found to be disabled and female disability rate is around 19. The state wise distribution of total disability rate indicates that Orissa has the highest disability rate while Maharashtra has the lowest. There are more than 9 states where disability rate is more than national average. In general, sex ratio among people with disabilities shows that they are skewed towards men. However, ‘inter disability analysis reflects that while there are more men with orthopedic disability and visual impairment, mental health issues are skewed towards women. The rural urban  disaggregated data shows that urban sex ratios are masculine in nature. Though there has been some progress in recording state specific data on disability, gender disaggregated data pertaining to each form of disability and also regional spread is yet to be achieved. This is a primary requirement for making any programmatic provisions for addressing the concerns of women with disability. Also, framing a national level program for all women with disability, without taking into account other disparities such as class, caste and region will fall short of achieving the desired goal.


Women with Disability and Employment

The reality of economic empowerment of people in lower and Middle Income countries is people’s access to employment opportunities. Women with disability are the most disadvantaged with regard to their employment status. The labor market can be conceived of as being divided into two distinct segments: a ‘primary’ labor market with low paid ‘dead- end’ jobs and ‘secondary’ labor market which consists of well paid white collar jobs with good career prospects. The prerequisite for the first category is physical strength and the ability to carry out arduous work and the requirement for the second category is higher education and professional qualification. Women with disabilities cannot meet any of these requirements both on the grounds of their physical impairment and also on account of their lack of access to basic education.

The Directive Principles of State Policy of the Indian Constitution enshrines the following provisions for people with disability in the Indian Constitution. While Article 39 deals with principles of policy to be followed by the State, especially with regard to securing (a) that the citizens, men and women equally, have the right to an adequate means of livelihood, right to shelter, food, education, work and so on; (b) that the health and strength of workers, men and women and tender age of children are not abused and that children are not forced by economic necessity to avocations unsuited to their age or strength; and (c) that children are given opportunities and facilities to develop in a healthy manner and kin conditions of freedom and dignity and that childhood and youth are protected against exploitation and against moral and material abandonment.

The Article 41 prescribes that the State shall, within the limits of its economic capacity and development, make effective provision for securing the right to work, to education and to public assistance in cases of unemployment, old age, sickness and disablement, and in another cases of undeserved want. Article 42 further requires making provision for securing just and humane conditions of work. Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995, three Sections of the PwD Act are intended to address exclusively the issue of employment of the persons with disabilities; which requires that: The appropriate Governments to identify posts in the establishments which can be reserved for persons with disabilities; It also prescribes the quota reservation, not less than 3 percent for persons or class of persons with disabilities of which 1 percent each shall be reserved for persons suffering from certain vision impairment of 40 percent certified by Medical authority, The reservation of not less than 3 percent for poverty alleviation for the benefits of persons with disabilities has also been provided in the schemes. The source of employment is through special employment exchange. The employment status of persons with disabilities shows that disabled adults have far lower employment rates than the general population. In fact, employment of persons with disabilities actually fell from 43 percent in 1991 to 38 percent in 2002, despite the country’s economic growth.

SOCIAL COMPETENCIES: HUMAN DEVELOPMENT BEYOND THE INDIVIDUAL

Individuals cannot flourish alone; indeed, they cannot function alone. The human development approach, however, has been essentially individualistic, assuming that development is the expansion of individuals’ capabilities or freedoms. Yet there are aspects of societies that affect individuals but cannot be assessed at the individual level because they are based on relationships, such as how well families or communities function, summarized for society as a whole in the ideas of social cohesion and social inclusion.

Individuals are bound up with others. Social institutions affect individuals’ identities and choices. Being a member of a healthy society is an essential part of a thriving existence. So one task of the human development approach is to explore the nature of social institutions that are favourable for human flourishing. Development then has to be assessed not only for the short-run impact on individual capabilities, but also for whether society evolves in a way that supports human flourishing. Social conditions affect not only the outcomes of individuals in a particular society today, but also those of future generations.

Social institutions are all institutions in which people act collectively (that is, they involve more than one person), other than profit-making market institutions and the state. They include formal nongovernmental organizations, informal associations, cooperatives, producer associations, neighbourhood associations, sports clubs, savings associations and many more. They also consist of norms and rules of behavior affecting human development outcomes. For example, attitudes towards employment affect material wellbeing, and norms of hierarchy and discrimination affect inequality, discrimination, empowerment, political freedom and so on. To describe what those institutions can be and do, and to understand how they affect individuals, we can use the term social competencies.

Central to the human development perspective is that societal norms affect people’s choices and behaviours towards others, thus influencing outcomes in the whole community. Community norms and behaviours can constrain choice in deleterious ways from a human development perspective-for example, ostracizing, or in extreme cases killing, those who make choices that contravene social rules. Families trapped in poverty by informal norms that support early marriage and dowry requirements might reject changes to such entrenched social norms. Social institutions change over time, and those changes may be accompanied by social tension if they hamper the interests of some groups while favouring others. Policy change is the outcome of a political struggle in which different groups (and individuals) support or oppose particular changes. In this struggle, unorganized individuals are generally powerless, but by joining together they can acquire power collectively. Social action favouring human development (such as policies to extend education, progressive taxation and minimum wages) happens not spontaneously, but because of groups that are effective in supporting change, such as producer groups, worker associations, social movements and political parties. These organizations are especially crucial for poorer people, as demonstrated by a group of sex workers in Kolkata, India, and women in a squatter community in Cape Town, South Africa, who improved their conditions and self-respect by joining together and exerting collective pressure.

Societies vary widely in the number, functions, effectiveness and consequences of their social competencies. Institutions and norms can be classified as human development-promoting, human development-neutral and human development-undermining. It is fundamental to identify and encourage those that promote valuable capabilities and relationships among and between individuals and institutions. Some social institutions (including norms) can support human development in some respects but not in others: for example, strong family bonds can provide individuals with support during upheavals, but may constrain individual choices and opportunities.

Broadly speaking, institutions that promote social cohesion and human development show low levels of disparity across groups  for example, ethnic, religious or gender groups) and high levels of interaction and trust among people and across groups, which results in solidarity and the absence of violent conflict. It is not a coincidence that 5 of the 10 most peaceful countries in the world in 2012, according to the Global Peace Index, are also among the most equal societies as measured by loss in Human Development Index value due to inequality. They are also characterized by the absence of discrimination and low levels of marginalization. In some instances ant discriminatory measures can ease the burden of marginalization and partially mitigate the worst effects of exclusion. For instance, US law mandating that hospital emergency rooms offer treatment to all patients regardless of their ability to pay partly mitigates the impact of an expensive health care system with limited coverage, while affirmative action in a range of countries (including Brazil, Malaysia, ‘South Africa and the United States) has improved the situation of deprived groups and contributed to social stability.

The study of social institutions and social competencies must form an essential part of the human development approach-including the formation of groups; interactions between groups and individuals; incentives and constraints to collective action; the relationship among groups, politics and policy outcomes; the role of norms in influencing behaviours; and how norms are formed and changed.