2009 India Report

      Details

Title

Monitoring of Human Rights of Persons With Disabilities in India

Authors

Swadhikaar Center for Disabilities Information, Research and Resource Development, with Technical Assistance & Support from Disability Rights Promotion International (DRPI)

Additional Collaborating Partners

  • National Institute for the Mentally Handicapped
  • Centre for Culture, Law and Society (C-CLS), NALSAR University of Law
  • Andhra Pradesh State Legal Services Authority
  • Asmita Resource Centre for Women
  • Leonard Cheshire International – South Asia

Publication Date

2009

      Report Content

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This Report has been financed by the Swedish International Development Cooperation Agency (Sida). Sida does not necessarily share the views expressed in this material. Responsibility for its contents rests entirely with the authors.

Foreword & Acknowledgements

Foreword

To agree internationally on provisions and standards for human rights is one thing. To live by them is another matter.

The fact that the international community now has fully recognized that the exclusion and discrimination facing people with disabilities is a human rights concern for all nations in the world is of extreme importance for hundreds of millions of people living with a disability. It offers great opportunities to improve their living conditions.

However, real change can only be achieved, if we learn to identify, describe and report human rights violations against people with disabilities. We must use our efforts to develop our capacity in monitoring the situation through a sharp human rights lens. Persons with disabilities themselves must play the major role in this pioneering work. This is what we want to achieve through the Disability Rights Promotion International (DRPI) project and pilot projects with partners from the disability communities of several countries.

This is also the reason why the Swedish International Development Cooperation Agency (Sida) has provided us with economic resources for this task.

We want to thank Swadhikaar and, in particular, M. Pavan Muntha, Project Coordinator and Anuradha S. Echambadi, Lead Researcher and all of the monitors and monitoring assistants who worked very hard to make this report possible. Heartfelt thanks also goes to our other collaborating partners: National Institute for the Mentally Handicapped, Centre for Culture, Law and Society (C-CLS), NALSAR University of Law, Andhra Pradesh State Legal Services Authority, Asmita Resource Centre for Women and Leonard Cheshire International – South Asia. This project provides a model for similar projects in other countries in which people with disabilities themselves take on the monitoring of their own rights. We hope that it is the beginning of a series of reports that will lead to social justice for people with disabilities in India.

Bengt Lindqvist and Marcia Rioux
Co-Directors, Disability Rights Promotion International

Acknowledgements

Swadhikaar Center for Disabilities Information, Research and Resource Development is deeply indebted to the persons with disabilities, both interviewees and monitors and monitoring assistants for their incredible interest in engaging with issues of human rights to share and document the lived experience of human rights violations.

Swadhikaar expresses heartfelt gratitude to Hon’ble Justice Zack Yacoob of the Constitutional Court of South Africa for his lively interaction with the monitors and monitoring assistants immediately after the Study and for his input on disabled movement for a global change in the judiciary and in social attitudes and to Hon’ble Sri Justice Bilal Nazki, former acting Chief Justice of Andhra Pradesh for suggesting an independent authority to exclusively look into all aspects concerning the welfare of persons with disabilities.

Swadhikaar is also obliged to the great support that it was able to gather from organizations and their representatives/heads of organizations, Prof. Marcia Rioux, Co-Director, Disability Rights Promotion International and York University, Canada, Prof. Ranbir Singh, former Vice Chancellor of NALSAR University of Law, Kalpana Kannabiran, Asmita Resource Center for Women, Dr. L. Govinda Rao, former Director, National Institute for Mentally Handicapped, Dr. T.C. Sivakumar, Director, National Institute for the Mentally Handicapped, Dr. Beena, Administrative Director, Asmita Resource Center for Women, Mr. K. R. Rajendra Regional Representative, Leonard Cheshire Disability-South Asia Regional Office, and Mr. Gopal Mitra, International Campaign Coordinator, Leonard Cheshire Disability-UK and Prof. Sirish Deshpande, President, National Federation for the Blind for their intellectual support and guidance.

Swadhikaar extends its gratitude to Mr. Venkateshwar Reddy, Senior Judge, Nandyal District Court, Mr. Vijay Kumar, IAS, CEO, Indira Kranthi Padham, Government of Andhra Pradesh and Ms. Rita Samson, Project Coordinator, DRPI without whose presence and facilitation the Project would not have been possible.

Swadhikaar is thankful to the committed work of Mrs. Paula Pinto and Mr. Ravindra Walters and appreciates them highly for their critical and invaluable inputs in terms of ideas and creativity for the data analysis and completion of the Report.

Swadhikaar is forever thankful and obliged to Mr. Krishna Reddy Medapati of Swadhikaar and Mr. M. Madan Mohan, Mr. Baleshwar and Mr Sudhakar from National Institute for the Mentally Handicapped and Asmita Resource Center for Women’s Accounts team of Ms. Sarah and Ms. Sudha for their unstinting, uncomplaining and dedicated administrative and accounting as well stationery supply and Xeroxing support to complete the Project.

Introduction

The issue of Social Justice is centered around equal distribution of resources. Human accomplishments and planetary inheritances must be accessible for common pursuit of exploration and human enhancement. Barriers of any kind – either natural-physical or civil-social – should not come in the way of pursuing the common interests. While accessing resources such as rights and entitlements, physiological and psychological differences unleash barriers and such barriers permeate the social fabric of our everyday life, the production and distribution practices of all types of resources remained mainly as a rhetorical/academic vocation. Such narcissistic, male- and able body-centered vocational engagement quite often functions with a sort of immunity to the critique of marginalized communities – communities which have been denied access to common resources.

In the context of thinking about common access to common resources, it becomes necessary to understand and consolidate the shared knowledge and experiences of individuals. Hence the reconciliation with their diverse practices in accessing socio-economic and cultural resources from the stand point of the inter-sectionality of marginalization, for instance the experiences of Dalits, women, aadivaasis, minorities.

Disability is found and salvaged, from simple realms of the experiences of persons with disabilities and reproduced within the discourses of relations between the individual and society, culture and language. What constitutes our attitude in relation to disability is that which is neither physiological nor psychological nor is it a simple constituent of social order but a range of identities that evolve from time to time. Disability is not a condition or a state that is particular to an individual but a catalytic terrain or a trajectory that provides a field or a body for the flow of socio-cultural attitudes. There is a felt need for a call for a network of organizations of people with disabilities to demand for their right to equality in terms of accessing resources beyond the narrow alibis of “Nationalism” to build a grid of international cooperation for peace and harmony.

Background of the Project

The DRPI-India Project on Monitoring the Human Rights of Persons with Disabilities is the first of its kind to be initiated in the state of Andhra Pradesh, India, as well as Asia. This Project is aimed at monitoring the Human Rights of Persons with Disabilities with the support of Field Research based on interviews with persons with disabilities, as well as of critical analysis of current national disability policy.

Prior to the launch of this Project on 2nd May 2007, Swadhikaar Center for Disabilities Information, Research and Resource Development in collaboration with Asmita Resource Center for Women and AP State Legal Services Authority, and funded by NALSAR University of Law conducted 10 Human Rights Education Workshops for Persons with Disabilities living in 10 different districts, out of the 23 in the state.

While advancing the Human Rights perspective in organizations working exclusively with persons with disabilities as well as others, Swadhikaar collaborated its endeavor with 10 Non-Government Organizations in these 10 Districts who were as follows:

  • ACTIVE, Khammam
  • Rural Development Trust, Ananthapur
  • Action for Development, West Godavari
  • Jan Kalyan, East Godavari
  • Nature, Vishakapatnam
  • GSRDS, Vizianagaram
  • SNEHA, Krishna
  • Pragathi Seva Samithi, Warangal
  • Commitments, Kosgi
  • Community Development Center and Indira Kranthi Padham, Ranga Reddy

In each of the districts, on an average, around 50 persons with disabilities were given these trainings on human rights. Once these trainings were completed over a period of 6 months NALSAR University of Law held a three-day Legal Literacy Workshop, in which 5 active persons from each of these 10 districts who were trained as part of the Human Rights Education Workshops was selected and given training on the legislations pertaining to the Persons with Disabilities. One of the resource persons to the training, the Administrative Officer, himself a Judge, took the decision right there in the training hall that all those who were attending the training would be enrolled as Para-Legal Volunteers of the AP State Legal Services Authority, and would take up the legal redress issues of persons with disabilities in their respective districts.

When Disability Rights Promotion International (DRPI) expressed its interest and willingness to implement a Human Rights Monitoring Project for Persons with Disabilities in the state of Andhra Pradesh and in continuation with the perseverance to promote human rights education, consultative meetings were organized with representatives of Center for Culture, Law and Society – NALSAR University of Law, National Institute for the Mentally Handicapped, AP State Legal Services Authority, Asmita Resource Center for Women and Leonard Cheshire-South Asia to operationalize the Project. These organizations, along with Swadhikaar, agreed to become the Collaborating Partners for the Project.

The first step toward operationalisation of the project involved the selection of the Project Management Team. The Management Team included members from the Center for Culture, Law and Society – NALSAR University of Law, National Institute for the Mentally Handicapped, Asmita Resource Center for Women, Mandala Vikalangula Seva Samiti – a Disabled Peoples’ Organisation, as well as the Project Coordinator and Lead Researcher for the Project.

The Project was officially launched on 2nd May 2007 with a one week long training seminar for monitors and monitoring assistants (who were most of them persons with disabilities themselves) held from 3rd May to 9th May 2007. The training, facilitated by two resource persons from Disability Rights Promotion International, provided those who attended with an understanding of disability as a human rights issue as well as knowledge and practice of interviewing techniques.

General Picture

As per the census 2001, the total number of people with disabilities in the state of Andhra Pradesh is 1,364,981. Out of them 1,050,400 (76.95 %) live in rural areas. The population of people with disabilities in urban areas is 314,581 (23.05 %). Of course, the Andhra Pradesh Government in its official website, Andhra Pradesh News, now accepts that the population of persons with disabilities in the state is 6%. For the first time, people with disabilities were enumerated based on type of disability in the year 2001. National Sample Survey Organization (NSSO), another national statistical agency also enumerated the population of people with disabilities in its 58th Round of National Sample Survey in 2002. There were differences between data of census and NSSO on types of disability. Nevertheless both data reveal the fact that nearly 75% of people with disabilities reside in rural areas.

There are many movements initiated for the protection of rights of and finding solutions to the issues of persons with disabilities. These struggles have been taken up by the persons with disabilities themselves mainly to assert their rights to Life and Dignity. The main objective of the identity movements of people with disabilities is to eradicate the negative attitude towards persons with disabilities in the family and societal spheres, and in the policies of the government. At the same time, these movements stress the importance of making available opportunities for people with disabilities in all the sectors in society by the government, ensure equality not just by the government but by families and society too and ensure that appropriate and necessary measures are undertaken.

Given the colonial legacy regarding the enactment and implementation of legislations in India , even the Acts and Laws made to protect the rights of persons with disabilities tend to be based on charity and sympathy. As one of the most prominent Human Rights Proponents, Prof. Haragopal commented during his lecture as part of the “Workshop on Human Rights and Disability” on 3rd to 5th September 2005, the popular notion underlying current law is that reasons for disability are to be found in previous birth, one is born a person with disability and the solutions for this disability can be found in the next birth. This belief in a person’s Karma, or fate, is unhelpful to the cause of people with disabilities. The attitude and behavior of the society and the thinking about the family is in fact very demeaning toward the person with disabilities, which is quite saddening. Even other identity movements going on in this country, such as those around women, aborigines, Dalits (lower castes) and the poor are still far from completely comprehending and grasping of the issues of people with disabilities. All the policies and programs towards the development of people in this state by the government also do not keep in mind or focus on the problems of people with disabilities.

As has been found in the study conducted as part of “Disabled Deserve Different Deals”, a Report by Action Aid India (2001), there are thousands of people with disabilities in this state who go hungry and thirsty, not because there is no food or drinking water, but because if they did eat and drink, they do not have anyone to escort or accompany them outside to defecate. Added to this is the extreme poverty which weighs people with disabilities down. The 62 years of Indian Independence has not in any way recognized the issues facing persons with disabilities who are also citizens of this country. One graphic example to prove this is that even after all these years, neither the Central nor the State Governments have the proper statistics as to how many people with disabilities live in this country and state. The state remembers persons with disabilities only when national festivals like Independence Day, Republic Day, International Disabled Day or Mahatma Gandhi’s Birth Anniversary come up every year and the politicians and civil society organizations want to shower their pity and sympathy on people with disabilities by distributing tricycles, hearing aids, crutches and other aids and appliances. The worst thing is that they think they are doing such a major favor to persons with disabilities by taking up these programs.

In the last 10 or 15 years the State Government introduced several welfare programs including setting up Self-Help Groups for people with disabilities and increasing the amount given as pensions. These measures were introduced as strategies to promote the empowerment of persons with disabilities. However, given the limited amounts of these pensions (500 Rupees a month), in these times of increase in the prices of all commodities, paucity of food grains and ever increasing inflation, this small amount is hardly enough for the barest of sustenance for anyone, let alone persons with disabilities. By increasing the pension amount, it might be of some solace to people with disabilities but it is nothing but eyewash by the government and does nothing else to actively address the problems they face.

The transport services available to all in the cities, towns and villages at present, especially the vehicles used for transport, are not even accessible to the people with physiological differences. The elderly, pregnant women, women carrying babies in their arms, very young children and people with disabilities have to face many problems when they travel by these vehicles because of their inappropriate designs. For example, a woman without the use of her arms or legs, an aged man who has to walk with the support of a stick or a young man or woman who have to walk with either a baby or a set of books in their arms find it extremely difficult to get into buses, auto rickshaws or trains, equally with the others and travel without a hassle. In addition to this, there are other problems like buses that never stop at the bus stand, heavy crowds in each bus stand waiting to get into the buses that never come on time, and rise in the rates of auto rickshaws due to the rise in prices of diesel. All these only tend to compound the problems for people with disabilities.

More and more, as development touches everything, the buildings are also becoming higher and higher. But due to the frequent power cuts, the lifts and elevators in these buildings cannot work and the people using these buildings have to climb the stairs which is next to impossible for able bodied persons, let alone for persons with disabilities. In fact, the official demographic statistics regarding persons with disabilities is much less than the actual figures and the process through which the data regarding the population with disabilities has to be improved by the State Government. There are not enough medical experts, equipment and more than all this, funds are completely inadequate for the identification of persons with disabilities, all of which goes to show the negligent and uncaring attitude of the government policies for people with disabilities.

The government scheme of distributing bus passes to people with disabilities uses discrimination criteria and does not sanction them to one and all.

Though both the World Bank and the Department for International Development, Government (DFID) of Great Britain have extended huge amounts (billions of dollars) as grants and loans to the State Government towards social development in the rural and urban areas of this state for the last few years, even at this time the Indira Kranthi Padham, the Project through which these funds are disbursed for various schemes and programs, has failed to identify all the persons with disabilities in the rural areas of this State and it continues to fail in this task. One of the saddest facts is that very few funds are allocated under the State Budget for the welfare of people with disabilities and most of this money is spent on salaries and administrative expenses of the staff working in the concerned offices for Disabled Welfare.

According to “Disabled Deserve Different Deals”, a Report by Action Aid India (2001) 87% of the Budget allocated for people with disabilities is spent on salaries for the staff in the Disability Welfare Department and other administrative costs. The other 13% is spent for the running of several special schools, hostels for people with disabilities, distribution of books for the students with disabilities, aids and appliances, health care and identification of persons with disabilities all of which has to be accomplished with this small amount of money. Most persons with disabilities do not even have the basic information about how to access the most important things relating to themselves like health, education and livelihoods.

The hostels and residential schools established specially for the education of visual impaired and speech and hearing impaired children in the name of special facilities and training, have become worse than prisons, due to severe lack of funds and finances as well resources,. The State Budget had reached One Lakh Crore Rupees and the Chief Minister of the State proudly proclaims that 46 Thousand Crores from the above Budget are available as part of the 5-Year Plan from the Central Government (Source: Andhra Pradesh News). If the 3% reservation protected for people with disabilities in the People with Disabilities Act, 1995 were to be implemented, then at least 3000 Crore Rupees of the State Budget and 1600 Crore Rupees from the Plan Budget, that is 4600 Crore Rupees in total should be allocated for the welfare of people with disabilities in this state through several development programs. The reality is that barely 3% of this amount of 4600 Crores, that is 150 Crores, is just about allocated for the programs for persons with disabilities. The Persons with Disabilities Act also stipulates that 3% of the Budgets allocated for each of the Departments should be set aside for taking up the concerned programs for persons with disabilities but to date, this has not been implemented at all.

At present both the Central and State Governments can spend the allocated funds at the rate of One Rupee per person with disability. That is why many voluntary organizations are encouraged to get funds from outside the country to work with persons with disabilities.

In addition to all this, the State Government has increased the amount given to people with disabilities as disability pension from 200 to 500 Rupees, with the financial and administrative support of the Ministry of Rural Development, to be disbursed also through the functionaries of the same Department. The State Government is also planning to increase the money given for scholarships for children with disabilities who are studying in schools and colleges, equal to the amount given to students from lower castes and aborigines, which is unprecedented.

Despite these seeming advances, people with disabilities all over the state have for decades been questioning why the State Government is not showing any interest in implementing the adopted legislation and schemes. Why are the programs relating to people with disabilities not taken up at all or if taken up, done so negligently and with such lack of enthusiasm? Why are the funds allocated for the welfare of people with disabilities proving to be not at all useful in fulfilling the simple, basic needs of people with disabilities? Why are the hostels and homes meant for persons with disabilities turned into hell-holes? Why are the apartment buildings constructed for people with disabilities left to disintegrate, with no care? Why are the housing schemes both at the Central and State levels not sanctioned to persons with disabilities? When people with disabilities do not have any source of livelihood, how could they get the money to invest in constructing the subsidized housing, even if the government by mistake did sanction that scheme to them, and subsequently repay the loan amount to the government? What about the fate of persons with disabilities when the schemes are merely to be seen on paper, as part of the media propaganda, and where even the poorest without disability are finding it so hard to access these schemes? Answers for these questions are yet to be found. Some people with disabilities are getting involved in movements protesting this very negligence and lack of care. They run risks in doing this – some victims of police beatings and even arrests and most importantly they become victims insults and discrimination. They are protesting against the government machinery which is unable to spend the funds allocated properly or on time.

A protest was held with the demands that the Disability pension should be increased from Rs.200 to Rs.1500/-, the Reservation for Disabled should be increased from 3 to 7%, a national level Commission for Persons with Disabilities should be established and persons with disability should be appointed as the Disability Commissioner, an enactment should be made and implemented against the Atrocities on Persons with Disabilities as part of Punitive Action, scholarship amounts should be enhanced to that of SC, ST and BC students and fees reimbursement for the students with disabilities. Also activists with disabilities protested that a Government Order released by the State Government in 1984 (but never implemented) which said that any land for housing identified should allocate the said land to persons with disability first, should be immediately implemented.

Other demands included that people with disabilities should be taken in as Co-Option members in the Gram Panchayat, Mandal (Block) Parishad and Zilla (District) Parishad and Municipalities, and that Life Insurance should be made in the name of all the 60 lakh people with disabilities in the State, for a worth of 1 Lakh Rupees per person. The banks give a loan subsidy of 30% to lower caste persons like the SCs and STs whereas persons with disabilities are given only 3% subsidy. Persons with disabilities should be given priority when the government allocates housing sites under the Indiramma Scheme. These houses should be constructed in such a way that they are disability- friendly, and where they are constructed in the cities and towns, the houses on the ground floor should be allotted to people with disabilities and in the villages they should be allocated very close to the roads. All these were published in the front pages of all the newspapers in the state, be it Telugu or English Dailies on 27th November, 2007. As a result of this strong protest and movement by persons with disabilities all over the state, the Government of Andhra Pradesh issued several Government Orders, including:

  • Disability Pension is enhanced from Rs.200 to Rs. 500
  • Priority is to be given to Persons with Disabilities in the allocation of housing under the Indiramma Housing Scheme
  • Hostel Mess Charges are to be enhanced for students with disabilities on par with the lower caste students (SC or ST students) from Rs.330/- to Rs.700/-
  • Re-imbursement of tuition fees and special fees are to be on par with SC and ST students at all levels of education

Just as every other citizen of this country and state, persons with disabilities also have the right to equal participation in the economic, social and cultural development achieved in the state. The Identity Movement has proved already that persons with disabilities have the strength of will to question and critique the state government’s policies, discrimination and negligence regarding them. When people in the villages have to migrate in search of livelihoods to the cities all over the country they leave their relatives with disabilities in their homes behind, as they are considered to be a burden. There are thousands of poor parents in this state who leave their children with elderly family members and with great regret that they are unable to even properly feed their children with disabilities. Similarly there are thousands of parents who cannot afford to ensure medical and health care to their children, either born with disabilities or who acquire disabilities due to disease or accidents and are forced to resort to quacks and witchcraft practitioners due to their extreme poverty, to get their children ‘cured’ but in fact end up pushing their children into greater peril.

The number of babies born with disabilities or people who acquire disabilities due to chemical pollution, fluorine, genetically modified seeds used for cultivation and adulterated pesticides and fertilizers being used for cultivation of crops [and accidents] has been on a steep rise in the last few years (from The Eenadu [the leading Regional Telugu Language Newspaper in the State], 21st October, 2008). They are living lonely lives, away from the community, because of the attitude of family members. Is it not the lack in the policies that our brothers and sisters, young and old alike are forced to live lives like this just because of their disability? The political representatives and the government must become sensitive to the issues of people with disabilities and give them opportunities. Or else they should bring in changes in the policies and plans, like the disability movement has been demanding to increase the government funding and bring in more positive measures for the welfare of people with disabilities.

People with disabilities are to be found in all social strata, castes, classes, regions and sexes. All those who consider themselves as able-bodied persons can acquire a disability some time during their life time. The government’s policies today make a laughing stock of both people with disabilities and people without disabilities alike. The UN Convention for the Rights of Persons with Disabilities came as a fitting reply and response to all the issues faced by people with disabilities all over the world. India is one of the signatories and has also ratified the Convention. Before this, India had four important pieces of legislation which had been enacted in the recent past for the protection of rights and welfare of people with disabilities in this country. These are the:

  • Mental Health Act, 1987
  • the Rehabilitation Council of India Act, 1991
  • the Persons with Disabilities (Equal Opportunities, Full Participation and Protection of Rights) Act, 1995 and
  • the National Trust for Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 2000.

But except on a very few rare occasions, these pieces of legislation have more or less remained on paper and have not been implemented. It is not an exaggeration at all to say that an overwhelming proportion of the judges, magistrates and lawyers and well qualified civil servants do not even know of the enactment of the People with Disabilities Act. What is more surprising is that the majority of persons with disabilities themselves or their families, especially those from the rural areas, do not know that such legislation, meant for the protection of their rights exists. According to the agreement under the United Nations Convention (CRPD), once India has signed and ratified it, appropriate changes and amendments have to be brought in the national legislations and India is required to report to the United Nations on the implementation of the Convention (CRPD). Yet months after signing the Convention, the Central Government is just now taking steps or measures toward the amendment of these dated legislations, which do not meet the standards of the Convention (CRPD). There has been a systematic attempt by the governments at both the Center and the State to shrug off their responsibilities and thrust the very same responsibility for the welfare of people with disabilities over to private agencies, voluntary organizations and even to individual persons with disabilities themselves. It is the responsibility of the citizens to protest this move by the government and ensure that it comes up with more pro-people with disabilities policies, with greater acceptance of its responsibilities. There is an opportunity here for the Central and State governments to look towards a future in which people with disabilities can be contributing members of society, integrated into the social structure. It would be an advance for the government to take up this challenge.

The Disabled Welfare Department was set up in this state along with all the other states in the country in order to protect the rights of persons with disabilities but due to the paucity of funds (and even if funds are allocated as they are not made available in a timely manner) the Department has been systematically failing to extend the necessary services to persons with disabilities. The Financial Corporation for people with disabilities initiated at the National level set up for providing for livelihoods for this group of the population has today become completely useless, exactly because of this reason. Based on the people with disabilities Act, Coordination Committees have to be set up at the State level with eminent personalities, like judges, lawyers and other legal experts, civil servants and representatives of civil society organizations. Disabled People Organizations should be members in this Committee and give/evolve guidelines for the Disability Welfare Department to implement them. But rarely are these guidelines taken into advisement. Due to these prevailing conditions, the Department ends up distributing aids and appliances to a few people with disabilities and that too with the help and funding of the voluntary organization working with persons with disabilities on Independence or Republic Days. But the irony is that there are many persons with disabilities who are yet to get these aids and appliances.

Today there are many NGOs and voluntary organizations which are running Community Rehabilitation programs for persons with disabilities in the state. There are many institutions here which are getting funds from international development agencies and using the same well by taking up many development programs for people with disabilities and fulfilling their needs. The activities the government is limiting itself to are the distribution of ration cards, running vocational training courses and media propaganda. The media advertisements that the government publishes – that its development schemes are being accessed by many people – are accessible to and understood by very few people. The question here is whether there is any person with a disability who has been successful in accessing these schemes. For any common person to access these schemes, in addition to filling out the paper work, that person needs to have other ‘qualifications’. That person should be close and intimate with either the local political leader or government official, it is not enough that he or she belongs to a vulnerable community. The person with a disability should have the additional qualifications of evoking pity, sympathy and charity. In some cases, it has been reported that they have had to pay money on bribes to government officials as well as the political leaders. In addition to this, it has been reported that some people without disabilities who access the schemes for persons with disabilities are producing illegal medical certificates in this state.

There are many occasions in which persons with disabilities have run around offices trying to access the schemes, certificates and loans and lost hope but were lured again by officials and middlemen, in order to drain them of their hard earned money, as can be observed from the one reported case from the field study where one person interviewed says,

The government really does not want to pay attention that is what I think. Added to this, the amount of corruption and bribery in the departments has become so rampant, it has gone way out of the hands of the common man whom the administration is supposed to provide services.

Or another person who says,

Nothing moves without the grease of bribes, no work gets done. There is no State, in fact without bribes, they are least bothered about those who might not be able to give bribe amounts. The very first thing they look for is the bribe money.

It is time to make people understand that to humiliate persons with disabilities is to humiliate and insult the very Constitution of India and the policies of this country, that there is a need to come out of this silent tolerance of humiliation, discrimination and negligence in this helpless way.

Women with Disabilities

Women with disabilities throughout the country face multiple forms of discrimination and their condition in the state of Andhra Pradesh is not different. Women with disabilities are denied education and health care as a matter of fact. They have been denied even a single square meal a day and proper clothes to wear. They routinely become victims of the violence and molestation of able-bodied men in society. They are pushed to live the lives of living dead, bemoaning every moment as to why they have to be alive. They are made to do all the chores in the house, washing clothes, the dishes, cleaning the house, cooking the food for everyone, take care of very young children in the house baby-sitting, all this just for a bowl of gruel, without asking anything for themselves. A woman with a disability is an object of ridicule and humiliation for everyone, for family members, for society and even the government. Women with disabilities are not even called with their given names in many cases, their disability being their only name and identity. No one is ready to get married to a woman with disability. In many parts of the state, women with disabilities have to settle to being wives to men who are already married once or twice, bearing the violence of and torture of their husbands and other family members and live only waiting for death to take it all away.

And the lives of women with intellectual or psychological disabilities are even worse as they are driven out of their homes by their family members and they live on the streets, as beggars and face all forms of violence from just about everyone, without any protection at all. As most often there are no toilets or bathrooms inside the houses in the rural areas, not just women with eisabilities but women in general have to face many discomforts and humiliation both in the house and outside, in the community and at the same time, they are becoming victims to many gynecological related health problems. There are thousands of girls with disabilities who had to drop out of schools and colleges because there are no proper toilet facilities in those buildings. (Source: People with Disabilities in India: Commitments to Outcomes, The World Bank Report, 2007)

Children with Disabilities

Addressing systematic discrimination has a hitch which may be characterized as the inadequate compliance with existing patriarchal caste and class hierarchy along side of the quality of governance that is always already defined by the experiences of the “able” bodied persons. The hitch/inadequate compliance is important to examine to find solutions to the problem of infringements to the notion of education for all.

According to the ICESCR Committee, the measures that States have to take to meet their obligations under each Covenant right may be divided into three levels or types: obligations to respect, to protect and to fulfil. These levels or types have been explored by the Committee in the context of the right to education, the right to food and the right to health. Focusing on the Right to education, the obligation to respect the right to education requires States to refrain from adopting any measures that would hinder or prevent the enjoyment of education. The obligation to protect the right to education requires them to ensure that no other actor interferes with the enjoyment of education. Lastly, the obligation to fulfil, the extent of which is subject to the wording of each right, requires States to fulfil or provide for the realization of the right to education.

Though the concept of Education for All addresses the immediate need of enrolling all children in Primary and Secondary Schools, there have been many systemic hurdles, ranging from individual to governments. These hurdles are in the rural areas, and particularly in urban slums, and they infringe upon the rights of a large number of children’s to education.

If children with disabilities are born to parents who cannot take care of them, they may try to get rid of all their children, just so they can get rid of the child with disability too! The parents in these cases cannot be blamed as they have to depend solely on their own hard labor to survive from day to day and they live in extreme poverty. Girls and boys with disabilities born into such families have to suffer the most. As the bare minimum educational facilities are rarely accessible to them even if they were to access education at the local level (and as they often would have to move out of their villages and towns to the cities for higher education, which is next to impossible, both socially and economically) they are unable to find appropriate livelihoods, so that they can lead their lives with self-respect. If they were given encouragement and equal participation in society, then they would be able to contribute to a better society by bringing in better policies and programs beneficial to one and all.

Livelihoods

Economic rights are an important facet of human rights and, broadly pertain to the creation of opportunities and facilities for enabling human beings to earn their livelihood in fair and just conditions established on the principle of equality and equity. Economic rights envisage a system of social security in old age, sickness and similar circumstances. The jurisprudence on social, economic and cultural rights in India over the last two decades has gone far beyond the issue of non-discrimination. The Supreme Court has established a harmonious relation between the fundamental right to life and many, so called, non-justiciable rights envisaged in the Directive Principles of the Constitution of India.

As it has been shown time and again, if any person is given an opportunity to live independently with self-respect and dignity, people from all walks of life, irrespective of their differences in terms of ability or disability, gender, class, caste, region or language have come out with innovative ideas. Particularly, in the context of opportunities of employment guarantee that gives such self-respect and dignity within the family and society, people with disabilities have often outgrown the stereotypical opinion of employers or governance. In the rural areas, there are a number of instances where people with a lack of one or more than one limb or lack of hearing ability or vision or of intellectual disabilities are found working as part of the labor force, ranging from agricultural sector to construction and industry on the one hand, and on the other, management of community health, sanitation and hygiene, gardening or community forestry.

Governance and Disability

Communities and individuals from the margins of critical knowledge systems often gave momentum to the people’s organizations, policy makers and institutions of governance to defuse prevarication and to concretize their roles and responsibilities in understanding the communities of persons with disabilities and planning for their survival with dignity. For example, there have been several shifts in perspective in understanding how disability is conceptualized and contextualized. From an 18th century medical approach, which defined the person with disability as “suffering” from an impairment or a loss that needed treatment, to the present when we see a 180-degree shift to perceiving persons with disability as citizens with the same rights and entitlements as other able-bodied persons, the journey has been a long one. However, as the debates on disability move towards the development and human rights approach, the people’s organizations, policy makers, NGOs, disability rights activists and donor agencies have begun to re-examine the role of the state not as a mere provider of welfare services for people with disabilities.

Increasingly, this endeavor has come to recognize that disability needs to converge with the larger context of the development agenda like health, education, employment and poverty alleviation programs. Facilitating the concept of convergence and integrated service delivery for people with disabilities within the existing services of the government is, therefore, an agenda for development that could result in the emergence of models that are to scale and sustainable in the long run.

Caste, class, and age biases and gender equity are indicators for appraisal in understanding social justice and equal distribution of resources. To understand the abilities of persons belonging to the above social groups, a critical examination of the experiences of the “cultured” silence and passivity is worth exploring. This passivity is really the strength of these groups and hence makes the negotiations possible to circumvent fear, threat, hunger, and neglect while at the same time constantly questioning the power relations. The issues related to people with disabilities cut across all forms of negotiations from within and remain symbiotic at the outset as a socio-cultural entity in the society.

Human Rights and Disability

Persons with disabilities frequently live in deplorable conditions, and face physical and social barriers, which prevent their integration and full participation in the community development. The situation is not different in the state of Andhra Pradesh where millions of adults and children are segregated, deprived of virtually all their rights, and sometimes lead wretched and marginalized lives.

Although the international disability community has spoken of disability as a human rights issue for several decades, not all persons with disabilities view discrimination and abuse in terms of international human rights instruments. For some people, discrimination and abuse have become normal, everyday occurrences that are part of their lives as persons with disabilities.

The right to live is a universal norm. Persons with disabilities cannot be treated as an exception to this norm. Yet this fact needs to be emphasized – for the universal norm often appears disregarded in action. From the legal point of view, there are three implications to this statement: (a) the recognition that persons with disabilities have specific rights; (b) respect for these and all their rights; and (c) the obligation to do what is necessary to enable persons with disabilities to enjoy the effective exercise of all their human rights on an equal footing with others.

The Universal Declaration of Human Rights refers specifically to the rights of persons with disabilities. Article 1 declares that all human beings are born free and equal in dignity and rights. There is a joint responsibility at the national and international level to ensure these rights are translated into concrete action. The right to equality is one of the most fundamental human rights norms. The guarantee of equality is reflected in several provisions of the International Covenant on Economic, Social and Cultural rights (ICESCR) and International Covenant on Civil and Political Rights (ICCPR) as well as the Constitution of India and other national laws for people with disabilities.

Country Profile

India, officially the Republic of India, is a country in South Asia. It is the seventh-largest country by geographical area, the second-most populous country, and the largest democracy in the world. Bounded by the Indian Ocean on the south, the Arabian Sea on the west, and the Bay of Bengal on the east, India has a coastline of 7,517 kilometers (4,671 mi). It is bordered by Pakistan to the west; China, Nepal, and Bhutan to the north-east; and Bangladesh and Myanmar to the east. India is in the vicinity of Sri Lanka, the Maldives, and Indonesia in the Indian Ocean.

Home to the Indus Valley Civilization and a region of historic trade routes and vast empires, the Indian subcontinent was identified with its commercial and cultural wealth for much of its long history. Four major world religions, Hinduism, Buddhism, Jainism and Sikhism originated there, while Zoroastrianism, Judaism, Christianity and Islam arrived in the first millennium CE and shaped the region’s diverse culture. Gradually annexed by the British East India Company from the early eighteenth century and colonised by the United Kingdom from the mid-nineteenth century, India became an independent nation in 1947 after a struggle for independence that was marked by widespread nonviolent resistance.

India is a republic consisting of 28 states and seven union territories with a parliamentary system of democracy. It has the world’s twelfth largest economy at market exchange rates and the fourth largest in purchasing power. Economic reforms have transformed it into the second fastest growing large economy; however, it still suffers from high levels of poverty; illiteracy, and malnutrition. A pluralistic, multilingual, and multiethnic society, India is also home to a diversity of wildlife in a variety of protected habitats.

The name India is derived from Indus, which is derived from the Old Persian word Hindu, from Sanskrit Sindhu, the historic local appellation for the Indus River. The ancient Greeks referred to the Indians as Indoi (Ινδοί), the people of the Indus. The Constitution of India and common usage in various Indian languages also recognise Bharat as an official name of equal status. Hindustan, which is the Persian word for “Land of the Hindus” and historically referred to northern India, is also occasionally used as a synonym for all of India.

Stone Age rock shelters with paintings at the Bhimbetka rock shelters in Madhya Pradesh are the earliest known traces of human life in India. The first known permanent settlements appeared over 9,000 years ago and gradually developed into the Indus Valley Civilisation, dating back to 3300 BCE in western India. It was followed by the Vedic period, which laid the foundations of Hinduism and other cultural aspects of early Indian society, and ended in the 500s BCE. From around 550 BCE, many independent kingdoms and republics known as the Mahajanapadas were established across the country.

In the third century BCE, most of South Asia was united into the Maurya Empire by Chandragupta Maurya and flourished under Ashoka the Great. From the third century CE, the Gupta dynasty oversaw the period referred to as ancient “India’s Golden Age.” Empires in Southern India included those of the Chalukyas, the Cholas and the Vijayanagara Empire.

Science, engineering, art, literature, astronomy, and philosophy flourished under the patronage of these kings.

Following invasions from Central Asia between the tenth and twelfth centuries, much of North India came under the rule of the Delhi Sultanate and later the Mughal Empire. Under the rule of Akbar the Great, India enjoyed much cultural and economic progress as well as religious harmony. Mughal emperors gradually expanded their empires to cover large parts of the subcontinent. However, in North-Eastern India, the dominant power was the Ahom kingdom of Assam, among the few kingdoms to have resisted Mughal subjugation.

From the sixteenth century, European powers such as Portugal, the Netherlands, France, and the United Kingdom established trading posts and later took advantage of internal conflicts to establish colonies in the country. By 1856, most of India was under the control of the British East India Company. A year later, a nationwide insurrection of rebelling military units and kingdoms, known as India’s First War of Independence or the Sepoy Mutiny, seriously challenged the Company’s control but eventually failed. As a result of the instability, India was brought under the direct rule of the British Crown.

In the twentieth century, a nationwide struggle for independence was launched by the Indian National Congress and other political organizations. Indian leader Mahatma Gandhi led millions of people in national campaigns of non-violent civil disobedience. On 15 August 1947, India gained independence from British rule, but at the same time Muslim-majority areas were partitioned to form a separate state of Pakistan. On 26 January 1950, India became a republic and a new constitution came into effect.

Since independence, India has faced challenges from religious violence, casteism, naxalism, terrorism and regional separatist insurgencies, especially in Jammu and Kashmir and Northeast India. Since the 1990s terrorist attacks have affected many Indian cities. India has unresolved territorial disputes with China, which in 1962 escalated into the Sino-Indian War; and with Pakistan, which resulted in wars in 1947, 1965, 1971 and 1999. India is a founding member of the United Nations (as British India) and the Non-Aligned Movement. In 1974, India conducted an underground nuclear test and five more tests in 1998, making India a nuclear state. Beginning in 1991, significant economic reforms have transformed India into one of the fastest-growing economies in the world, increasing its global clout.

The Constitution of India, the longest and the most exhaustive constitution of any independent nation in the world, came into force on January 26, 1950. The preamble of the constitution defines India as a sovereign, socialist, secular, democratic republic. India has a bicameral parliament operating under a Westminster-style parliamentary system. Its form of government was traditionally described as being ‘quasi-federal’ with a strong centre and weaker states, but it has grown increasingly federal since the late 1990s as a result of political, economic and social changes.

The President of India is the head of state elected indirectly by an electoral college for a five-year term. The Prime Minister is the head of government and exercises most executive powers. Appointed by the President, the Prime Minister is by convention supported by the party or political alliance holding the majority of seats in the lower house of Parliament. The executive branch consists of the President, Vice-President, and the Council of Ministers (the Cabinet being its executive committee) headed by the Prime Minister. Any minister holding a portfolio must be a member of either house of parliament. In the Indian parliamentary system, the executive is subordinate to the legislature, with the Prime Minister and his Council being directly responsible to the lower house of the parliament.

The legislature of India is the bicameral Parliament, which consists of the upper house called the Rajya Sabha (Council of States) and the lower house called the Lok Sabha (House of People). The Rajya Sabha, a permanent body, has 245 members serving staggered six year terms. Most are elected indirectly by the state and territorial legislatures in proportion to the state’s population. 543 of the Lok Sabha’s 545 members are directly elected by popular vote to represent individual constituencies for five year terms. The other two members are nominated by the President from the Anglo-Indian community if the President is of the opinion that community is not adequately represented.

India has a unitary three-tier judiciary, consisting of the Supreme Court, headed by the Chief Justice of India, twenty-one High Courts, and a large number of trial courts. The Supreme Court has original jurisdiction over cases involving fundamental rights and over disputes between states and the Centre, and appellate jurisdiction over the High Courts. It is judicially independent, and has the power to declare the law and to strike down union or state laws which contravene the Constitution. The role as the ultimate interpreter of the Constitution is one of the most important functions of the Supreme Court.

At the federal level, India is the most populous democracy in the world. For most of the years since independence, the federal government has been led by the Indian National Congress (INC). Politics in the states have been dominated by several national parties including the INC, the Bharatiya Janata Party (BJP), the Communist Party of India (Marxist) (CPI(M)) and various regional parties. From 1950 to 1990, barring two brief periods, the INC enjoyed a parliamentary majority. The INC was out of power between 1977 and 1980, when the Janata Party won the election owing to public discontent with the state of emergency declared by the then Prime Minister Indira Gandhi. In 1989, a Janata Dal-led National Front coalition in alliance with the Left Front coalition won the elections but managed to stay in power for only two years. As the 1991 elections gave no political party a majority, the INC formed a minority government unDRPIe Minister P.V. Narasimha Rao and was able to complete its five-year term.

The years 1996–1998 were a period of turmoil in the federal government with several short-lived alliances holding sway. The BJP formed a government briefly in 1996, followed by the United Front coalition that excluded both the BJP and the INC. In 1998, the BJP formed the National Democratic Alliance (NDA) with several other parties and became the first non-Congress government to complete a full five-year term. In the 2004 Indian elections, the INC won the largest number of Lok Sabha seats and formed a government with a coalition called the United Progressive Alliance (UPA), supported by various left-leaning parties and members opposed to the BJP.

Since its independence in 1947, India has maintained cordial relationships with most nations. It took a leading role in the 1950s by advocating the independence of European colonies in Africa and Asia. India was involved in two brief military interventions in neighboring countries – Indian Peace Keeping Force in Sri Lanka and Operation Cactus in Maldives. India is member of the Commonwealth of Nations and a founding member of the Non-Aligned Movement. After the Sino-Indian War and the Indo-Pakistani War of 1965, India’s relationship with the Soviet Union warmed at the expense of ties with the United States and continued to remain so until the end of the Cold War. India has fought three wars with Pakistan, primarily over Kashmir but it also facilitated the creation of Bangladesh in 1971. Additional skirmishes have taken place between the two nations particularly in 1984 over Siachen Glacier and in 1999 over Kargil.

In recent years, India has played an influential role in the ASEAN, SAARC, and the WTO. India has provided as many as 55,000 Indian military and police personnel to serve in thirty-five UN peace keeping operations across four continents. Despite criticism and military sanctions, India has consistently refused to sign the CTBT and the NPT, preferring instead to maintain sovereignty over its nuclear program. Recent overtures by the Indian government have strengthened relations with the United States, China and Pakistan. In the economic sphere, India has close relationships with other developing nations in South America, Asia and Africa.

India maintains the third-largest military force in the world, which consists of the Indian Army, Navy and Air Force. Auxiliary forces such as the Paramilitary Forces, the Coast Guard, and the Strategic Forces Command also come under the military’s purview. The President of India is the supreme commander of the Indian armed forces. India maintains close defence cooperation with Russia, France and Israel, who are the chief suppliers of arms. The Defence Research and Development Organisation (DRDO) has overseen the indigenous development of sophisticated arms and military equipment, including ballistic missiles, fighter aircrafts and main battle tanks, to reduce India’s dependence on foreign imports. India became a nuclear power in 1974 after conducting an initial nuclear test, Operation Smiling Buddha and further underground testing in 1998. India maintains a “no first use” nuclear policy. On 10 October, 2008 Indo-US civilian nuclear agreement was signed, prior to which India received the IAEA and NSG waivers, ending restrictions on nuclear technology commerce with which India became de facto sixth nuclear power in world.

India is a federal republic of twenty-eight states and seven Union Territories. All states, and the two union territories of Puducherry and the National Capital Territory of Delhi have elected governments. The other five union territories have centrally appointed administrators and hence are under direct rule of the President. In 1956, under the States Reorganisation Act, states were formed on a linguistic basis. Since then, this structure has remained largely unchanged. Each state or union territory is further divided into 610 districts for basic governance and administration. The districts in turn are further divided into tehsils (earlier known in Andhra Pradesh as Mandals, now reverted to the old reference of Tehsils) and eventually into villages.

States

  • Andhra Pradesh
  • Arunachal Pradesh
  • Assam
  • Bihar
  • Chhattisgarh
  • Goa
  • Gujarat
  • Haryana
  • Himachal Pradesh
  • Jammu and Kashmir
  • Jharkhand
  • Karnataka
  • Kerala
  • Maharashtra
  • Rajasthan
  • Madhya Pradesh
  • Manipur
  • Meghalaya
  • Mizoram
  • Nagaland
  • Orissa
  • Punjab
  • Sikkim
  • Tamil Nadu
  • TripuraUttar Pradesh
  • Uttarakhand
  • West Bengal

Union Territories:

  • Andaman and Nicobar Islands
  • Chandigarh
  • Dadra and Nagar Haveli
  • Daman and Diu
  • Lakshadweep
  • National Capital Territory of Delhi
  • Puducherry

For most of its post-independence history, India adhered to a quasi-socialist approach with strict government control over private sector participation, foreign trade and foreign direct investment. However, since 1991, India has gradually opened up its markets through economic reforms and reduced government controls on foreign trade and investment. Foreign exchange reserves have risen from US$5.8 billion in March 1991 to US$308 billion on 4 July 2008, while federal and state budget deficits have decreased. Privatisation of publicly owned companies and the opening of certain sectors to private and foreign participation has continued amid political debate. India’s GDP in terms of USD exchange-rate is US$1.089 trillion. When measured in terms of purchasing power parity (PPP), India has the world’s fourth largest GDP at US$4.726 trillion. India’s per capita income (nominal) is US$977, while its per capita (PPP) is US$2700.

With an average annual GDP growth rate of 5.7% for the past two decades, the economy is among the fastest growing in the world. India has the world’s second largest labour force, with 516.3 million people, 60% of whom are employed in agriculture and related industries; 28% in services and related industries; and 12% in industry. Major agricultural crops include rice, wheat, oilseed, cotton, jute, tea, sugarcane, and potatoes. The agricultural sector accounts for 28% of GDP; the service and industrial sectors make up 54% and 18% respectively. Major industries include automobiles, cement, chemicals, consumer electronics, food processing, machinery, mining, petroleum, pharmaceuticals, steel, transportation equipment, and textiles. Along with India’s fast economic growth comes its growing demand for energy. According to the Energy Information Administration, India is the sixth largest consumer of oil and third largest consumer of coal.

Although the Indian economy has grown steadily over the last two decades; its growth has been uneven when comparing different social groups, economic groups, geographic regions, and rural and urban areas. Income inequality in India is relatively small (Gini coefficient: 36.8 in year 2004), though it has been increasing of late. Wealth distribution in India is fairly uneven, with the top 10% of income groups earning 33% of the income. Despite significant economic progress, a quarter of the nation’s population earns less than the government-specified poverty threshold of $0.40 per day. In 2004–2005, 27.5% of the population was living below the poverty line.

More recently, India has capitalised on its large pool of educated, English-speaking people, and trained professionals to become an important outsourcing destination for multinational corporations and a popular destination for medical tourism. India has also become a major exporter of software as well as financial, research, and technological services. Its natural resources include arable land, bauxite, chromite, coal, diamonds, iron ore, limestone, manganese, mica, natural gas, petroleum, and titanium ore.

In 2007, exports stood at US$145 billion and imports were around US$$217 billion. Textiles, jewellery, engineering goods and software are major export commodities. While crude oil, machineries, fertilizers, and chemicals are major imports. India’s most important trading partners are the United States, the European Union, and China.

With an estimated population of 1.13 billion, India is the world’s second most populous country. Almost 70% of Indians reside in rural areas, although in recent decades migration to larger cities has led to a dramatic increase in the country’s urban population. India’s largest cities are Mumbai (formerly Bombay), Delhi, Kolkata (formerly Calcutta), Chennai (formerly Madras), Bengaluru (formerly Bangalore), Hyderabad and Ahmedabad.

India is the most culturally, linguistically and genetically diverse geographical entity after the African continent. India is home to two major linguistic families: Indo-Aryan (spoken by about 74% of the population) and Dravidian (spoken by about 24%). Other languages spoken in India come from the Austro-Asiatic and Tibeto-Burman linguistic families. Hindi, with the largest number of speakers, is the official language of the union. English, which is extensively used in business and administration, has the status of a ‘subsidiary official language;’ it is also important in education, especially as a medium of higher education. The constitution also recognises in particular 21 other languages that are either abundantly spoken or have classical status. While Tamil and Sanskrit have been studied as classical languages for many years, the Government of India, using its own criteria, has also accorded classical language status to Kannada and Telugu. The number of dialects in India is as high as 1,652.

Over 800 million Indians (80.5%) are Hindu. Other religious groups include Muslims (13.4%), Christians (2.3%), Sikhs (1.9%), Buddhists (0.8%), Jains (0.4%), Jews, Zoroastrians, Bahá’ís and others. Tribals constitute 8.1% of the population.

India’s literacy rate is 64.8% (53.7% for females and 75.3% for males). The state of Kerala has the highest literacy rate (91%); Bihar has the lowest (47%). The national human sex ratio is 944 females per 1,000 males. India’s median age is 24.9, and the population growth rate of 1.38% per annum; there are 22.01 births per 1,000 people per year.

India’s culture is marked by a high degree of syncretism and cultural pluralism. It has managed to preserve established traditions while absorbing new customs, traditions, and ideas from invaders and immigrants and spreading its cultural influence to other parts of Asia.

Source: Wikipedia

Critique of Existing Legislation & National Policy

According to the 2001 Census conducted by the Government of India, there are a total number of 21,906,769 persons with disabilities in India. As per the Survey conducted by the National Sample Survey Organisation, Government of India in 2002, the distribution by type of disability is according to the following table:

Proportion of people by disability type and urban / rural location
Types of Disability Rural (In percentage) Urban (In percentage)
Blindness 10% 8%
Low Vision 4% 3%
Hearing 10% 9%
Speech 5% 4%
Mental retardation 4% 4%
Mental Illness 5% 5%
Locomotor 52% 55%
Multiple 10% 12%

When it comes to the legal and policy framework on disability in India some of the aspects that need to be looked at are the relevant guiding principles, articles and sections of the Constitution of India and judicial interventions, as well as disability specific Acts passed by Parliament. But first a historical perspective on disability related norms and policies in India has to be discussed and the work of the disability oriented non-government organizations (NGOs) currently active in the country introduced.

Historical Perspective

Despite having a progressive Constitution, an enlightened and alert judiciary, and a fast evolving legal regime with a clear disability focus, the ground level situation in the country leaves much to be desired. There is little impact of recent changes in law and policy, and that too is limited to small pockets of urban India. The slow pace of process of change can be attributed to the social construction of disability that views it as an individual issue and considers family as the primary institution responsible for dealing with it.

Though there is a long tradition in India of caring for the weak and vulnerable by family members at a great personal sacrifice, the role of the family as a sole support for people with disabilities grew out of the failure of colonial rulers in maintaining social safeguards that were available throughout ancient and medieval India. In fact, the concept of charity got introduced in India during British rule to basically contain problems of destitution, beggary, crime, and delinquency, which grew out of proportion with the diminishing of social safeguards that existed earlier.

In the Ancient India many important figures such as Kautilya (known as the Machiavelli of India, was the author of a Treatise on Political Administration called Artha Shastra) who was the mentor and political Guru of Chandra Gupta Maurya ( 321 BC – 279 BC), the Emperor Ashoka (269 BC – 232 BC) and even the Mughal Emperors (14th and 15th Centuries, AD), brought in many statutes which ensured the security of the downtrodden and poorest such as the aged, the ill and infirm. They ensured easy access to public health and focused on the self reliance and earmarked sustained livelihoods for the lower classes. Here specific mention must be made of Chandra Gupta who established workshops for the vocational rehabilitation of people with physical impairments and those who are socially disadvantaged members in society.

When the British took over political power in India, the programs and policies that the Rulers implemented in their mother country of Great Britain were also implemented here. Even after the Indian Independence the policy of charity towards persons with disabilities, a legacy of colonial times, continued wherein the first three Five Year Plans (1951-66). The sole support to people with disabilities comprised grants-in-aid to NGOs and the establishment of national institutions to prepare qualified personnel, mainly to serve in charitable institutions. During this period, a Central Social Welfare Board was set up in order to assist the voluntary organizations in implementing the several programs for people with disabilities in Indian Society.

Since the 1950s, when the Constitution of India was written, to the modern day India has enacted and been signatory to several national and international legislations, which stipulate that each and every citizen is a rights-holder and as such is entitled to all the basic facilities and schemes that should be implemented by the Government. But it can be seen that even by the 10th Five Year Plan, which has just come to an end, the Steering Committee on Social Welfare members have expressed deep concern that the role of and funding to the voluntary organizations working with Persons with Disabilities and other vulnerable communities is on a downward trend and urged an increase in funding to the NGOs as well as to tap the resources from the Corporate Sector, in order to implement the several Schemes and policies for the vulnerable communities including Persons with Disabilities. This is against the very principles of the International and National Human Rights legislations which insistently hold the State to be responsible to ensure the equal enjoyment of rights by one and all. Commenting on State obligations, the Committee on Economic, Social and Cultural Rights in General Comment No. 5 states,

while it is appropriate for Governments to rely on private, voluntary groups to assist persons with disabilities in various ways, such arrangements can never absolve Governments from their duty to ensure full compliance with their obligations under the Covenant.

There is a need to understand what exactly are the specific statutes that have been stipulated under the different legislations and enactments that have been brought out for the welfare of persons with disabilities over the last few years. The first and foremost document relevant for each and every citizen of India is the Constitution of India which was formulated and written during the year 1956.

The Constitution of India

Equality, dignity, autonomy and liberty are the founding principles on which international human rights law is premised and as such the Preamble to the Constitution of India, while giving a structure and philosophy of governance, clearly proclaims to,

…secure to all its citizens; Justice, social, economic and political; Liberty of thought, expression, belief, faith and worship; Equality of status and of opportunity; and to promote among them all Fraternity assuring the dignity of the individual and the unity and integrity of the Nation…

Equality

Under the right to equality the Constitution of India guarantees to all citizens equality before law and equal protection of law (Article 14); and it prohibits discrimination on grounds of ‘religion, race, caste, sex, place of birth or any of them’ (Articles 15 and 16). Further, to ensure equality in the outcome, it encourages the State, under Articles 16(3) and 16(4), to frame any law or make provision for the reservation of appointments or posts in favour of any backward class of citizens, which, in the opinion of the State, is not adequately represented in its services.

Non-Discrimination

The formal recognition of discrimination on grounds of disability is a recent phenomenon and laws enacted even twenty years ago generally did not include disability in the list of prohibited discriminations. For instance, the Constitution in Articles 15 and 16 prohibits discrimination in the matter of employment and access to public facilities on grounds of religion, race, caste, sex and place of birth, but is silent on disability.

Directive Principles of State Policy and the Fundamental Rights

The Preamble, the Directive Principles of State Policy and the Fundamental Rights enshrined in the Constitution, envisage a very positive role for the State towards its disadvantaged citizens.

Article 41 declares that, ‘(T)he 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.’

Article 46 lays down an obligation on the State ‘(T)o promote with special care the educational and economic interests of the weaker sections of the people, … and … protect them from social injustice and all forms of exploitation.’

Enforceability of Socio-Cultural rights

Theoretically, social and cultural rights have not been perceived enforceable both in the Constitution of India (Part III) and under the international human rights law. The Covenant on Economic, Social and Cultural Rights requires the realisation of these rights progressively by States in accordance with their level of development and economic capacity. Such a concept has assumed greater acceptance since the enforcement of these rights requires financial investment and thus the pace of implementation is linked to the implementing states’ economic capacity. Under the Directive Principles of State Policy (Part IV) too, the rights enunciated are to be realised in accordance with the level of economic capacity. State and its agencies tend to take refuge under this arrangement for justifying non-action.

Protection of Human Rights Act, 1993

After ratification of the International Covenant on Economic, Social and Cultural Rights (ICESCR) and the International Covenant on Civil and Political Rights (ICCPR), India brought into force the Protection of Human Rights Act, 1993. This Act provides for the establishment of the National Human Rights Commission and States Human Rights Commissions for better protection of human rights. Section 2(d) of this Act defines ‘human rights’ as: ‘the rights relating to life, liberty, equality and dignity of the individual guaranteed by the Constitution or embodied in international covenants and enforceable by courts in India.’ Thus, the Act provides a mechanism to monitor the implementation of various constitutional provisions and obligations under international covenants on different rights, including economic, social and cultural rights. This also indicates India’s readiness to implement non-justiciable rights.

Disability Laws

The movement demanding for the protection of their rights was initiated by the persons with disabilities way back in the 1970s in this country and though the Central Government recognized the need for such an enactment in 1980 itself, it was not until 1995 that Government was able to take affirmative action in enacting the Persons with Disabilities Act. One of the main reasons for the delay of more than 15 years in coming out with a legislation for persons with disabilities was because disability as an issue was put under the State List under the Constitution of India and as such the Center could not enact this legislation. But once India signed the Proclamation of Equality and Full Participation of People with Disabilities in Asian and Pacific Region, the Article 249 of the Constitution was made use of, wherein it empowers the Parliament to legislate on any subject falling in any list in order to fulfill its international obligations. The following is a brief of some of the important legislations at work at present in the country.

National Policy for Persons with Disabilities 2006

Some of the major areas on which the National Policy concentrates on include:

  1. Prevention of Disabilities
  2. Rehabilitation Measures
    1. Physical Rehabilitation Strategies
      1. Early Detection and Intervention
      2. Counseling and Medical Rehabilitation
      3. Assistive Devices
      4. Development of Rehabilitation Professionals
    2. Education for Persons with Disabilities
    3. Economic Rehabilitation of Persons with Disabilities
      1. Employment in Government Establishments
      2. Wage employment in Private sector
      3. Self-employment
  3. Women with disabilities
  4. Children with Disabilities
  5. Barrier-free environment
  6. Issue of Disability Certificates
  7. Social Security
  8. Promotion of Non-Governmental Organizations (NGOs)
  9. Collection of regular information on Persons with Disabilities
  10. Research
  11. Sports, Recreation and Cultural life
  12. Amendments to existing Acts dealing with the Persons with Disabilities

Some important things that may need to be critically examined are

  • The highlight of the document is the change in the use of language
  • bringing education of people with disabilities under the Ministry of Human Resources Development and all that is Special and Exclusive for people with disabilities is confined only to that of persons with severe disabilities
  • there is also a considerable emphasis on inclusivity in terms of private and public responsibility in the context of health, education, livelihood, sports, games and other cultural activities
  • one of the important features in the above mentioned areas is the use of technology in the areas of communication and mobility, that is, provision for required software and hardware, built infrastructure, roads and other modes of transport, and aids and appliances
  • interestingly, research agendas that which is being transferred to Ministry of Human Resources Development (MoHRD), also brings in genetic sciences, only to the extent of prevention of disability
  • the document is committed more to medical rehabilitation than the rights of persons with disabilities
  • this very well reflects in the area of research envisaged in the document (Chapter VIII, page 25) which at once forecloses the research agenda within the confines of understanding that social attitudes are mirrors of pure and transparent and easily available social and cultural behaviour and such attitudes are easily available “out there” without any relationship to law, development, and other human sciences or science and technologies.
Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995

Referred to as Persons with Disabilities Act in common parlance, this Act is understood to be indeed an achievement for the Indian disability movement. Right from its Preamble this Act clearly states its objective of promoting and ensuring equality and full participation of persons with disabilities and aims to protect and promote economic and social rights of people with disabilities. The Act covers seven disabilities broadly and all these are based on the bio-medical model. The disabilities that have been listed in Section 2 include blindness, low vision, hearing impairment, locomotor disability or cerebral palsy, mental retardation, mental illness and persons cured of leprosy.

The Act details the various responsibilities of the Government, both State and Central, at all levels including establishments under its control. Some of the areas for which it lays down specific measures for the development of services and programs for equalizing opportunities include the enjoyment of right to education, work, housing, mobility and public assistance in case of severe disability and unemployment. The implementing agency for the mandates of this Act are a Central Co-ordination Committee and State Co-ordination Committees representing major ministries, Members of Parliament and disability NGOs and having a woman with disability as a member.

Other than this a separate Commissionerate of Disabled Welfare, with a Chief Commissioner at the Center and Commissioners at the State levels work for the implementation of the various welfare schemes meant for the persons with disabilities. Another important responsibility of the Commissionerate is to redress individual grievances, provide safeguards to the rights of persons with disabilities, monitor implementation of disability related laws, rules and regulations, and oversee the utilization of budget allocated for persons with disabilities. These quasi-judicial bodies and especially the Commissioner are vested with the powers of a civil court.

Though this was a revolutionary legislation when it was enacted, in as much as it addresses the issues of Persons with Disabilities directly for the very first time in the history of Jurisprudence in this country, the instrument is now in urgent need of some amendments. The most significant weaknesses that have surfaced are related to the absence of a powerful implementing instrumentality. The necessity becomes urgent in the light of the UN Convention for the Rights of Persons with Disabilities which India has not only signed (3003-2007) but has even ratified (01-10-2007) . Though the concerned Ministry in the Central Government has accepted that there are issues to be considered in this Act, and constituted a Committee to work on the amendments, to date a great deal more progress has still to be made on this front.

National Trust for Welfare of Persons with Autism, Cerebral Palsy, Mental Retardation and Multiple Disabilities Act, 1999

The basic premise for the enactment of this Legislation was to ensure the additional care and protection needed by persons with severe and multiple disabilities, as also for their property and well-being. This Act focuses mainly on assuring a person with severe or multiple disabilities a life as independent as possible, and the opportunity to be part of the community as everyone else in society. Measures to ensure protection of people with severe and multiple impairments in the case of death of their family members or guardians, and to support the organisations which are working with people with severe and multiple disabilities in order to provide need based services in the time of crisis were also considered . To this end a National Trust has been set up at the Central level, with Local Level Committees (at the District Level), the members for which are appointed through vote by the registered organisations of the parents of children with severe and multiple disabilities and the Central Government has contributed 100 Crore Rupees and the annual interest from this Corpus is used for the mandated activities.

Mental Health Act, 1987

This Act primarily focuses on possible State’s intervention to secure and protect the lives of Persons with Mental Illness. This Act precedes the Human Rights Legislations and so tends to be more focused on regulating the standards of the institutions for mental health as well as appointment of various officials, officers and medical professionals in these institutions and has provisos for non-cruel treatment of the mentally ill patients as well as conducting research on the patients only after their consent or at least of their relatives or friends.

The fundamental flaw of this Act is that it takes it for granted that the only panacea for the mentally ill is institutionalization. This becomes problematic given that the monitoring and review mechanisms of these institutions are more or less non-existent, which becomes an open invitation for all sorts of human rights violations. Thus the National Human Rights Commission, at New Delhi, the Capital of the country, has had to intervene in reprimanding the administrators of institutions for the Mentally Ill on more than one occasion.

Rehabilitation Council of India Act, 1992

Though the Rehabilitation Council of India was set up by the Government of India in 1986 to regulate and standardize training policies and programmes in the field of rehabilitation of persons with disabilities, there remained an urgent need for ensuring minimum standards, as the majority of persons engaged in education, vocational training and counselling of persons with disabilities were not professionally qualified. As such, an Act of Parliament in 1992 made the Council a statutory body with following aims:

  • To standardize training courses for professionals dealing with people with disabilities;
  • To prescribe minimum standards of education and training of various categories of professionals dealing with people with disabilities;
  • To regulate these standards in all training institutions uniformly throughout the country;
  • To promote research in rehabilitation and special education; and
  • To maintain Central Rehabilitation Register for registration of professionals.

UN Treaties & India’s Obligations

Convention on the Elimination of all Forms of Racial Discrimination (CERD)
India signed and ratified the Convention on 4th January 1969
International Covenant on Civil and Political Rights (ICCPR)
India signed and ratified the Covenant on 10th July 1979
International Covenant on Economic, Social and Cultural Rights (ICESCR)
India signed and ratified the Covenant on 10th July 1979
Convention on the Rights of the Child (CRC)
India signed and ratified this Convention on 11th January 1993
Convention on the Elimination of All Forms of Discrimination against Women (CEDAW)
India signed and ratified the Convention on 8th August 1993
Convention against Torture (CAT)
India only signed on this Convention on 14th October 1997
Convention on the Rights of Persons with Disabilities (CRPD)
India singed on 30 March 2007 and ratified a few months later

Characteristics of Disability NGOs

As mentioned above, in the past, most of the work for the welfare of persons with disabilities has been taken up by charitable institutions and organizations. Over the last few years, however, there has been considerable contribution of Self-Help Groups and organizations of persons with disabilities themselves. The voluntary and charitable institutions are led by able bodied, well-meaning individuals, who often work on the assumption that persons with disabilities are incapable of leading independent lives. Their approach is akin to the biocentric model and thus their work is basically focused on service delivery. The organizations and institutions led and membered by people with disabilities, though a recent phenomenon and as such much less in number than the traditional charitable institutions, have been and do focus mainly on protection and attainment of their rights as citizens of this country and advocate tolerance to diversity and difference.

Both the State and people in society tend to accord greater importance to welfare oriented service delivery and as such that has what been implemented so far, as can be seen by the concern of the Steering Committee of the Planning Commission for the Tenth Five Year Plan in the reduction of the involvement of Charitable Organisations in the welfare work for persons with disabilities. This attitude is what has been hampering the work of the self-help organisations of people with disabilities and their parents for advocacy campaigns as it conflicts directly with the concept of development and human rights. Obstacles in social attitudes and cultural myths, apathy, and sympathy that remain blind to the unique abilities of people with disabilities must still be overcome through a paradigm shift from welfare to human rights.

Source: “Human Rights, Disability and Law”, National Human Rights Commission Report on the Status of Disability in India, 2005

Andhra Pradesh Profile

The monitoring of individual human rights experiences of people with disabilities in India took place in the state of Andhra Pradesh and involved 168 in-depth face-to-face interviews in three distinct sites. Before describing and discussing the results of this research, a profile of the state of Andhra Pradesh as well as of the three monitoring sites is provided.

Andhra Pradesh, abbreviated as A.P., and known as the “Rice Bowl of India”, is a state in southern India. It lies between 12°41′ and 22°N latitude and 77° and 84°40’E longitude, and is bordered by Maharashtra, Chhattisgarh and Orissa in the north, the Bay of Bengal in the East, Tamil Nadu to the south and Karnataka to the west. Andhra Pradesh is the 4th largest state in India by area 106,195 sq mi (275,608 km²) and population (75 million). It is the largest state in Southern India. Two major rivers, the Godavari and the Krishna run across the state. The small enclave (12 sq mi (30 km²)) of the Yanam district of Pondicherry state lies in the Godavari Delta in north-east of the state. Historically the region comprising the state was known as Andhraapatha, Andhradesa, Andhraavani, Andhra Vishaya, etc.

Andhra Pradesh can be divided into three regions, namely Coastal Andhra, Rayalaseema and Telangana. Andhra Pradesh has 23 districts. Hyderabad is the capital and, along with the adjoining twin city Secunderabad, is the largest city in the state. Visakhapatnam, Andhra Pradesh’s main seaport, is the second largest city of the state and is home to the Indian Navy’s Eastern Naval Command. Vijayawada due to its location and proximity to major rail and road routes is a major trading center and the third largest city of the state.

Telugu is the regional and official language of the state, spoken by 83.75% of the population. Telugu is the third most spoken language in India. The major linguistic minority groups in the state include the speakers of Urdu (8.63%) and Hindi (3.23%). The Indian government designated Telugu as a classical and ancient language on November 1, 2008.

The main ethnic group of Andhra Pradesh is the Telugu people who primarily belong to the Dravidian peoples.

Population by religion and language group
Religion Telugu Other languages Total
Total 83% 17% 100%
Hindu 81% 8%1 89%
Muslim 1% 8%2 9%
Christian 0.5% .5%3 1%
Other religions 0.5% .5% 1%
Note #1
Mainly Hindi
Return
Note #2
Mainly Urdu
Return
Note #3
Mainly Tamil
Return

Agriculture has been the chief source of income for the state’s economy. Three important rivers of India, the Godavari, Krishna and Thungabhadra flow through the state, providing irrigation. Rice, sugarcane, cotton, mirchi (chilli pepper), mango and tobacco are the local crops. Recently, crops used for vegetable oil production such as sunflower and peanuts have gained favour. There are many multi-state irrigation projects in development, including Godavari River Basin Irrigation Projects and Nagarjuna Sagar Dam, the world’s highest masonry dam.

Andhra Pradesh is a mineral rich state, ranking second in India in terms of mineral wealth. The state has about one third of India’s limestone reserves, estimated at about 30 billion tonnes. The state ranks first nationwide in hydro electricity generation with national market share of over 11%. The state ranks fourth in terms of overall GSDP and fourth in per capita GSDP among the major states of India. But given the global recession impacting on the national economy as well, the figures mentioned above are more on the downtrend.

Andhra Pradesh has a Legislative Assembly of 294 seats. The state has 60 members in the Parliament of India; 18 in the Rajya Sabha, the Upper House and 42 in the Lok Sabha, the Lower House. Andhra Pradesh had a series of governments headed by Congress (Indira) Party until 1982. Kasu Brahmananda Reddy held the record for the longest serving chief minister which was broken by N.T. Rama Rao in 1983. P.V. Narasimha Rao also served as the chief minister of the state, who later went on to become the Prime Minister of India in 1991. Among the notable chief ministers of the state are Tanguturi Prakasam, Chief Minister (CM) of Andhra State (the first CM of the present Andhra Pradesh was Neelam Sanjiva Reddy).

In 1983 the Telugu Desam Party (TDP) won the State elections and N.T. Rama Rao (NTR) became the chief minister of the state for the first time introducing a formidable second political party to Andhra Pradesh’s politics and thus breaking the single party monopoly on Andhra Pradesh’s politics. After a few months, Nadendla Bhaskar Rao usurped power when NTR was away in the United States for medical treatment. After coming back, NTR successfully convinced the then State Governor to dissolve the Assembly and call for a fresh election. TDP won the elections with a large majority and NTR became Chief Minister of the State for the second time. His government policies included investment in education, rural development and in holding corrupt government officials.

In 1989 Congress (I) came to power and in 1994 the TDP came back to power and ruled till 1999. In the 2004 Elections the Congress made a comeback, and the next State Elections are slated to be held in April 2009.

Andhra Pradesh is served by more than 20 institutes of higher education. All major arts, humanities, science, engineering, law, medicine, business and veterinary science are offered, leading to first degrees as well as postgraduate awards. Advanced research is conducted in all major areas. Andhra Pradesh has 1330 arts, science and commerce colleges; 1000 MBA and MCA colleges; 500 engineering colleges; and 53 medical colleges. The student to teacher ratio is 19:1 in higher education. According to the 2001 census, Andhra Pradesh has an overall literacy rate of 60.5%. While the male literacy rate is at 70.3%, the female literacy rate is only at 50.4%, a cause for concern.

Methodology for the Fieldwork

The fieldwork involved the realization of semi-structured interviews with persons with different kinds of disabilities. It began on the 19th of May and went on for 27 days in all the three selected sites. After a week-long training seminar trainees were divided into 6 teams, with one monitoring assistant and 2 monitors for each team. Two teams conducted the interviews in each of the three sites selected for the field study. All the monitors and monitoring assistants were provided with identity cards for the duration of the field study by the Principal Secretary, Women and Child Development, and Disabled Welfare Department, Government of Andhra Pradesh. The monitors were responsible for conducting the interviews, whereas the monitoring assistants were responsible for collecting the information regarding each of the sites, collect secondary data, and generally be of assistance to the monitors in identifying persons with disabilities to be interviewed.

Monitoring Sites

The three monitoring sites – Hyderabad, Kurnool and villages of three Mandals of Vishakapatnam District – were selected through a consultative process during the training seminar to reflect diversity in terms of population, geographical location, economic, social and cultural divide, and in terms of their distinct administrative identity. In this sense, Kurnool Town represents a semi-urban context, the villages of three Mandals of Vishakapatnam District stand for rural locations and Hyderabad provide the large urban setting. These three sites also represent the three distinct regions of the State, namely, Telangana, Rayalaseema and Coastal Andhra, respectively.

Town (Semi-Urban) – Kurnool Town
A map showing the numbered locations of various towns in Kurnool district in Andhra Pradesh, IndiaA map of Kurnool district in Andhra Pradesh state. Kurnool town is numbered 25.

Kurnool is a city in Kurnool district in Andhra Pradesh state of southern India. It is the administrative seat of Kurnool district. It is the former capital of Andhra State (not Andhra Pradesh), which was carved out of Madras State in 1953. The present day Andhra Pradesh was formed as a result of merger of Nizam (the Princely State of Hyderabad), Andhra, parts of Bombay, Madhya Pradesh, Orissa regions.

Kurnool as a village had existed for more than 2000 years. It is the only inhabited place between two rivers, of Tungabadra and Handri Rivers. After Indian Independence, the Kurnool Town was declared as a Capital City by the Andhra Government from 1st October 1953 and went on to be the Capital for 3 years, until 1st November 1956, by which time the Princely State of Hyderabad under the Nizams was brought under the control of the Union of India and then the Capital was shifted to Hyderabad, as it was considered to be more central to the State of Andhra Pradesh, under which the State of Hyderabad also came under. Kurnool Town was earlier known as Kandanavolu, which was changed to “Kurnool” when the British took over the town. In 12th century AD, the Odders, who carted stones for the construction of the temple Alampur, used the site on which the town now stands as a halting place before crossing the Tungabhadra and greased their cart wheels with oil locally supplied by some of the oil mongers, and called the place ‘Kandanavolu’, which literally means “lubricating village”. Another story for the name of the erstwhile village goes that bullock carts that came from far-off places to dig sand in the two rivers (that ran on both sides of the village), used to stop by to lubricate their wheels.

Kurnool area was selected by the Parsis and Arabians as their trading and commercial capital in the 14th and 15th Centuries and they carried their trade from here and ruled the area. After some time, the Vijayanagara kings from the neighboring Karnataka took over the rule of this region. The representative of Vijayanagara Empire was Konda Reddy, who ruled the area as a King. There is still a grand citadel called Konda Reddy Buruju to testify the glory it enjoyed in Vijayanagara times, but it is not certain how the watchtower got its name. There are many famous temples in this Town, of Nagalingeshwara Swami or Shiva Temple, and other temples of Vishnu in his different Avatars. During the British Raj Kurnool expanded and schools, churches, etc. were built.

Kurnool Town is spread over an area of 49.73 Square Kilometers. It has an average elevation of 274 metres (898 feet). On the Eastern side, there is Nandi Kotkur Mandal, on the Western side there is Kallur Mandal, on the Northern side is the Kurnool Mandal, and on the Southern side there is Veldurthi Mandal. The Rivers that surround the Kurnool Town are Tungabadra, which is one of the largest rivers in the South India, K.C. Canal constructed by the State Government, and Handri River all of which irrigate this entire District, which is also named after the Town, of Kurnool. The Tomb of Abdul Wahab, one of the Kings of this area, was constructed right next to the Handri River. The last Ruler of the Kurnool Town was Gopala Raju.

Kurnool is connected to most cities and towns in Andhra Pradesh and to the Metropolises of Bangalore and Chennai by the Andhra Pradesh State Road Transport Corporation (APSRTC) and the Karnataka State Road Transport Corporation.(KSRTC). National Highway 7 connects Kurnool to Hyderabad (210 km, 4.30 hours), Anantapur (140 km, 3.00hours) and Bangalore (360 km, depending upon the nature of service, 6.00 to 9.00 hours). NH 18, junctions with National Highway No. 7 near Kurnool – Nandyal – Cuddapah – Junction with National Highway No. 4 near Chittoor is 369 km. For movement within Kurnool, car and auto rickshaw rentals are available.

According to the 2001 Central Census, the total population of Kurnool Town is 342,973 in total and of this the number of men is 174,190 and the number of women is 168,783. There are 52,682 families which have own houses. The growth rate of this Town is 24.55 per cent. Of this, 99,787 people in the Town live Below the Poverty Line. There are 4,536 persons with Disabilities living in Kurnool Town. The increase in rate of the rural population in this Town is 34.09 percent and the Town growth is at the rate of 13.65 percent.

There are 50 wards in the Kurnool Town. There are all the government services and facilities necessary for a Town like District Collectorate, Government Hospital, Railway Station, State Transport and other Government Offices. The National Highway No. 7 which goes from Hyderabad, the Capital City of Andhra Pradesh to Bangalore, the Capital City of the neighboring Karnataka State goes through the Kurnool Town.

There are people from all religions who live in this Town but the predominant religions are Hindus and Muslims who comprise 80% of the population and people of the other religions like Christians comprise the other 20%. Similarly, 80% of the people in the town belong to the Backward Classes whereas 20% belong to Scheduled Castes and Tribes. The temperatures in the Town tend to be moderate, with the best season being from January to March, when it is almost Spring like, it is neither hot or cold. From March to June is a very hot period, and from July onwards there are the monsoons till September and after that till December it is the Winter season. The maximum temperatures during Summers are around 44-45 degrees Centigrade and a minimum of 31 degrees Centigrade. At the same time, the day temperatures during Winter is around 32 degrees Centigrade and night temperatures hover around 18-19 degrees Centigrade. The average rainfall during Monsoons is around 704 mm.

According to the 2001 Census, there are 270,312 persons in the Town who are literate, of which men are 119,046 and women are 88,266. There are 9 Kindergarten and 9 Primary Schools in the Town. There are 6 major Private Schools. There are 9 Schools under the Municipality. There are 8 Zilla Parishad (District level) Schools, 8 Junior Colleges, 2 Graduate Colleges, 1 Medical College, and 1 Law College. There are 45 Banks in total in this Town, of which 34 are nationalized banks, Village Banks are 2, 2 Cooperative Banks and 7 Private Banks.

Other than the main language of Telugu, the people in this Town also speak Urdu, Hindi and English. Some of the crops which grow in and around this District which is also named after the Town are Paddy, Sorghum, groundnuts, sunflower, chili, onion and cotton. According to the 2005 estimates, 248,251 Quintals of Paddy and 204,616 Quintals of Sorghum were produced. Some of the most important sources of livelihood for the people in Kurnool Town is the Rayalaseema Paper Mill which is the biggest in all of Asia and Sri Rayalaseema Alkaloid and Allied Chemicals Factory and Carbide Factories. As this region of the state is known for its high levels of mineral resources, limestone and granite are the topmost minerals mined. There are thousands of quarries from where stone used for construction of buildings is blasted and broken down into rubble, which also offers lot of livelihoods for laborers.

As with any other developed or developing Town, Kurnool is also segregated along class lines as far as its inhabitants are concerned. Where Real Estate is the big business for the rich of this town, the poor and poorest depend majorly on labor work for their livelihood. The middle class is mostly involved in running the trade and commerce as well as employed in the various government and non-government agencies in the town. One of the major causes of disability in the Town is the high presence of Calcium in the ground water, which is often the only source of drinking water, especially for the lower and middle classes. Added to this is the lack of awareness regarding the necessity of medical aid which compounds in children being born with disabilities or accident victims having permanent impairments.

Village (Rural) – Ananthagiri, Araku Valley and Dumbriguda Mandals of Vishakapatnam District
A map showing the numbered locations of Vishakapatnam district, in Andhra Pradesh, IndiaA map of Vishakapatnam district in Andhra Pradesh state. Dumbriguda is numbered 19, Arakuvalley is numbered 20 and Ananthagiri is numbered 21

Vishakapatnam or Vizag as it is known familiarly is the biggest city in this district, which is also named after the city. This is a fast developing city on the shores of the Bay of Bengal, the last few years seeing an unprecedented growth and development, as this city has been selected as the Second Capital of the State.

There are 56 Mandals in Vishakapatnam District. This District is at the foot hills of the Eastern Ghats, the Mountain Range, which occupy the entire Eastern side of the country. As such the Mandals or Blocks of Araku Valley and Dumbriguda are at the height of 3530 feet above the Sea level and Ananthagiri Mandal is at a height of 2700 feet above sea level, in the middle of hills covered with thick forest. These 3 mandals come under the purview of the Integrated Tribal Development Agency, a Central Government undertaking meant for the benefit and development of the tribals in this area, which covers 11 Mandals in total.

The geographical area of Araku Valley is 84,873 acres, of which the forest area is 33,874 acres and cultivated land is 30,768 acres. The Orissa state abuts this Mandal on the North and the Anathagiri and Hukumpeta Mandals are its Southern neighbors. The Vizianagaram District is to the East of this Mandal and Hukumpeta Mandal on its West. There are 14 Gram Panchayats in this Mandal and 170 villages.

The geographical area of Dumbriguda Mandal is 23,139 Hectares and of this, 236 Hectares are covered in thick forest. The cultivated land in this Mandal spreads to around 12,264 Hectares. The neighbors of this Mandal are as follows: On the North is Ananthagiri Mandal, South is Hukumpeta Mandal, East is Araku Valley Mandal, and West is Orissa State. There are 18 Gram Panchayats in this Mandal and 87 villages.

The geographical area of Ananthagiri Mandal is 57,283 acres of which 27,508 acres are under cultivation. The Mandal is surrounded by Araku Valley Mandal on the North, Davulapaka on the South, Vizianagaram District on the East and Hukumpeta on the West. There are 24 Gram Panchayats in this Mandal and 333 villages.

As far as population is concerned, according to the 2001 National Census, the total population of the three Mandals of Ananthagiri, Araku Valley and Dumbriguda is 1,46,483, of this men are 72,979 and women are 73,504. Of this, the Scheduled Castes are 3395 of which 1821 are men and women are 1574. The total population of Scheduled Tribes is 128,695 of which 65,159 are men and 63,536 are women. The total population of Persons with Disabilities in these 3 Mandals is 672.

Some of the major problems in these 3 Mandals are the almost complete non-existence of roads and safe sources of water, lack of coverage of electricity, and no sources at all of access to information, public or private. The prominent religions in these three Mandals are Hinduism, Christianity, Buddhism, and Islam in that sequence of numbers population wise. Mostly the Tribal people here offer their prayers to their own local Gods and Goddesses, indigenous to their cultures and traditions, more than to the other Hindu Gods and Goddesses that are followed in other parts of the state. Some of these are prominently Goddesses like Peddamma, Gangamma and most of them are considered to be Mother Goddess. Huge carnivals and festivals are held each year for each of these Mother Goddesses who is called by different names in different villages and habitations.

Some of the most important Tribal races living in these three Mandals are Konda Kapu, Kammari, Bagatha, Mannedora, Valmiki, Konda Dora, Nuka Dora, Kotiya, Gadhaba, Paranga Purushulu, other than those identified by the Central Government as Primitive Tribal Groups. Though Oriya and Telugu are the predominantly used languages, the Tribals also use their own indigenous languages too. As the indigenous strain of Oriya is the most predominant here, the people especially those who are above the age of 30 years as they are illiterate, can speak only this language and know none other. It is only the younger generation which is not only literate but has been educated in the areas where Telugu is spoken predominantly and the medium of language of education is also Telugu, who are more conversant with other languages than their own indigenous ones.

There are all the government offices, service providers and other agencies working in this area also, such as the Social Welfare Primary Schools, Residential Schools, Junior Colleges, the Revenue and Mandal Development Officer’s Office, Primary Health Centers, Hospitals, Sub-Station for Electricity, Post-Offices, Banks – both Nationalized and Private, but these are all present only in the Mandal Headquarters and all the Gram Panchayats and habitations are so far flung all around on the hills that they might as well be inaccessible.

The only livelihood for all the tribes living in the hills is agriculture and the common crops grown in these three Mandals are Paddy, Sorghum, and locally available cereals like Ragi, Sama, Korra, and other lentils like Chick pea, , chili, ginger, turmeric and other crops. The staple food for the people living here is to make a flour of Ragi seeds and make gruel of it and eat that for meals and this is considered to be very strengthening. Also, they eat thin gruel made from pounded rice in the mornings before they go to the fields to do their work.

The other source of income for the people here, other than working as laborers in agricultural fields is to gather different produce from the forest around, and these are the wild Mango, Kovel resin, which is used for the covers of capsules in the pharmaceutical industry, tobacco during June-July, honey, jackfruit, mango, bee’s fax, and tamarind in April-May, gooseberries and neem berries in January and February and they sell all this at the local Government Provisions Store and eke out their livelihood with the money.

As this is a cool place in summers this area has become famous as a tourist spot. Added to this, the hills, valleys and forests lend themselves to eco-tourism, and families can be seen to come from all over the state and country. Over a period of time, several tourism spots in this area have been developed by the State Tourism Ministry like Tribal Museum, Herbal and Aromatic Plant Gardens, several waterfalls and Borra Caves (stalactite and stalagmite formations). As a result of this, there is a high number of people who have come here to settle from other parts of the District and State for livelihood, to cater to the needs of the thousands of tourists, in the form of hotels, motels and eating outlets as well as private transport. In fact, it is thought that as far as Araku Valley alone is concerned, majority of the people living there are non-locals and a small minority of the people are local tribal people.

The tribal people do not have any other source of buying their commodities than to come to the Fair held once every week, where they come to sell all the produce from their fields and whatever they collected and gathered from the forest in these fairs and with the money they earn, they buy the things and provisions for the week that they need. Each Gram Panchayat holds a Fair one day during the week. The tribals come down from all over the forests and hills to sell and buy, sometimes from as far as 30 Kilometers away, with whatever they want to sell in baskets strung across their shoulders on a plank. The average rainfall in this area is around 300 to 350 mm during the Monsoons.

The hills in and around Araku Valley are famous for Bauxite, which is considered to be at the rate of 55 Million Tons. Bauxite is the core mineral ore to extract Aluminum. This mineral can be found at the depth of 2 to 50 meters below the earth. But just where this bauxite ore is supposed to be found, there are at least 200,000 Tribal peoples who have been living on these very hills for centuries together and not only would all of them be displaced but the damage done to the environment would be irreparable beyond belief. For a tribal the forest is his or her Mother and they do not know any other life, and if they are displaced they will be sent to the plains which is completely alien to them.

There are two specific laws which protect the rights of the tribal peoples in this area and around the district, which are meant for the Scheduled Tribes, one is the Panchayat Raj Extension to Scheduled Areas Act (or PESA Act as it is popularly known) and Forest (and Forest Dwellers’) Rights Act, 2006, which are Central legislations and 1/70, which is a state law forbidding the entry and buying of land of any kind of non-local and non-tribal people into the Agency area.

City (Urban) – Hyderabad

Hyderabad is the capital city and most populous city of the Indian state of Andhra Pradesh. The city of Hyderabad has an estimated population of around 6.1 million. Greater Hyderabad metropolitan area has an estimated metropolitan population of 8.6 million, making it an A-1 status city. Greater Hyderabad metropolitan area which incorporates 12 surrounding municipalities is the second largest in terms of land area in the country after Delhi.

Hyderabad is known for its rich history, culture and architecture representing its unique character as a meeting point for North and South India, and also its multilingual culture, both geographically and culturally. Also known as The City of Nizams and The City of Pearls, Hyderabad is today one of the fast developing cities in the country and a modern hub of Information technology, ITES, and biotechnology. The people of Hyderabad are known as Hyderabadis, a term derived from the city’s name Hyderabad.

Theories explaining the origins and etymology behind Hyderabad’s name differ. A popular theory suggests that after founding the city, Quli Qutb Shah fell in love with and married a local Banjara girl known as Bhagyamathi. Upon her conversion to Islam, Bhagyamathi changed her name to Hyder Mahal and the new city was named Hyderabad (literally, “the city of Hyder”).

Hyderabad’s history dates back to 500 BC, as proved by the discovery of numerous Iron Age sites belonging to that era. Muhammad Quli Qutb Shah, a ruler of the Qutb Shahi dynasty the ruling family of the Golconda, previously a feudatory of Bahmani sultanate that declared independence in 1512, founded the city of Hyderabad on the banks of the Musi River in 1591; to relieve a water shortage the dynasty had experienced at their old headquarters at Golconda. He also ordered the construction of the Charminar, the iconic monument of the city, in 1591, reportedly in gratitude to the Almighty for arresting the plague epidemic before it did irreversible damage to his new city.

After the Indian independence in 1947, under the terms of independence from the British, the Nizam wanted to either remain independent or accede to Pakistan. India, then, implemented an economic blockade and forced Hyderabad state to sign a Standstill Agreement with the Indian Union. On September 17, 1948, more than a year after India had gained independence, the Nizam signed the Instrument of Accession to the Indian Union in the aftermath of Operation Polo.

On November 1, 1956, the states of India were reorganized on linguistic grounds. The territories of the State of Hyderabad were divided between newly created Andhra Pradesh, Bombay state (later Maharashtra), and Karnataka. Hyderabad and the surrounding areas were added to Andhra Pradesh, based on the Telugu speaking community. Thus, Hyderabad became the capital city of the new state of Andhra Pradesh. Situated on the Deccan Plateau, Hyderabad has an average elevation of about 500 metres above sea level (1640 ft). Most of the area has a rocky terrain and some areas are hilly. There is a lot of cultivation in the surrounding areas with paddy fields and other crops which are grown.

The original city of Hyderabad was founded on the banks of river Musi. Now known as the historic “Old City”, home to the Charminar and Mecca Masjid, it lies on the southern bank of the river. The city center saw a shift to the north of the river, with the construction of many government buildings and landmarks there, especially south of the Hussain Sagar lake. The rapid growth of the city, along with the growth of Secunderabad and neighboring municipalities has resulted in a large and populous metropolitan area.

Hyderabad has a tropical wet and dry climate with hot summers from late February to early June, the monsoon season from late June to early October and a warm winter from late October to early February. Hyderabad gets about 32 inches (about 810 mm) of rain every year, almost all of it concentrated in the monsoon months. The highest temperature ever recorded was 46 degrees Celsius (115 F) while the lowest recorded temperature was 6 degrees Celsius (43 F). The city’s population in 2001 was 5.7 million and it has reached over 7 million in 2008 making it 4th largest city in India, while the population of the metropolitan area was estimated at over 9.5 million. Hinduism is the most widely practiced religion in the city. Muslims constitute about 40% of the population, making Hyderabad’s Muslim community the largest in Andhra Pradesh. Muslims have substantial presence across the city and especially they are densely concentrated in and around Old City. Christians constitute a small amount of the city’s population. Churches are located across the city and the popular ones are in Abids area.

Though Telugu is the principal languages of the city, Hindi and Urdu are also used around the city especially among the North Indians settled there. English has a strong presence among the educated people. The city has a considerable Marathi, Malayalee and Sikh population. The Telugu spoken here has assimilated many Urdu words into it. Similarly, Urdu spoken here is also unique, with influences of Telugu and Marathi, giving rise to a dialect sometimes called Hyderabadi Urdu or Deccani. The official language, Telugu, varies a little across the state but the core language remains the same. The state of Andhra Pradesh has the highest English speaking population in India.

The city is administered by Greater Hyderabad Municipal Corporation (GHMC), whose titular head is the Mayor who has few executive powers. In the past, the mayor was chosen by the legislative body of the corporation, but just before the last elections, the state government modified the Municipal Corporation of Hyderabad Act to stipulate that the mayoral election be held directly and simultaneously with the corporation elections. The real executive power of the corporation is vested in the Municipal Commissioner, an IAS officer appointed by the Andhra Pradesh state government. The Mayor and the Corporation legislative body can and have been in the past dismissed by the state government. For several years elections had not been held for the corporation. Recently the corporation completed its full term and elections are due to the GHMC and for the post of Mayor.

A large part of the twin city Secunderabad and some parts of Hyderabad itself come under the jurisdiction of the Secunderabad Cantonment Board (SCB) owing to a large presence of military units. The Hyderabad Police comes under the state Home Ministry and is headed by a Police Commissioner, an IPS officer. Basheerbagh, houses important government offices such as the Police Commissioner’s office, Police Control room, Income tax Commissioner’s office, Central Excise and customs office, Central Reservation office etc. The city is divided into five police zones, each headed by a Deputy Commissioner of Police. The Traffic Police is a semi-autonomous body under the Hyderabad Police.

The GHMC is in charge of the civic needs and the infrastructure of the metropolis. Hyderabad is divided into 110 municipal wards, each overseen by a corporator. The corporators of the administration are elected through a popular vote, and almost all the state political parties field candidates. The metropolitan area of Hyderabad covers three districts, Hyderabad Rangareddy and Medak. The administration of each district is headed by a District Collector who is in charge of property records and revenue collection for the Central government. The district collector also oversees the national elections held in the city.

Hyderabad is the seat of the State High Court known as the AP HIgh Court, and also has two lower courts – the Small Causes Court for civil matters and the Sessions Court for criminal cases.Hyderabad elects two members to the Lok Sabha, the lower-house of the Indian parliament, who represent the constituencies of Hyderabad and Secunderabad. In addition, parts of the city overlap two other Lok Sabha electoral districts. Hyderabad elects thirteen representatives to the State’s Legislative Assembly.

Hyderabad is the financial and economic capital of the state of Andhra Pradesh. The city is the largest contributor to the state’s gross domestic product, state tax and excise revenues. The workforce participation is about 29.55 percent. Starting in the 1990s, the economic pattern of the city has changed from being a primarily service city to being one with a more diversified spectrum, including trade, transport, commerce, storage, communication etc. Service industry is the major contributor, with urban workforce constituting 90% of the total workforce.

Hyderabad is known as the city of pearls, lakes and, lately, for its IT companies. The bangles market known as Laad Bazaar is situated near Charminar. Products such as silverware, saris, Nirmal and Kalamkari paintings and artifacts, unique Bidri handcrafted items, lacquer bangles studded with stones, silk-ware, cotton-ware and handloom-based clothing materials are made and traded through the city for centuries.

Hyderabad is a major centre for pharmaceuticals with companies such as Dr. Reddy’s Laboratories, Matrix Laboratories, Hetero Drugs Limited, Divis Labs, Aurobindo Pharma Limited, Lee Pharma and Vimta Labs being housed in the city. Initiatives such as Genome Valley, Fab City and the Nano Technology park are expected to create extensive infrastructure in bio-technology. Like many Indian cities, Hyderabad has witnessed a remarkable growth in the real estate business, thanks to a predominantly informationtechnology-driven boom in the 1990s and the retail industry growth over the last few years which have spurred hectic commercial activity. A number of mega malls have come up or are being built in the city. Real Estate demand in the suburban and rural areas surrounding Hyderabad has gone up exponentially leading to reckless increase in prices over the past few years.

The retail industry in Hyderabad is on the rise. Many International and national brands have set up retail chains here. The city has multiple CBDs (Central Business district) spread across the city. Major business/commercial districts are Abids, Ameerpet-Punjagutta-Somajiguda areas, Banjara Hills, Charminar area, Dilsukhnagar, Kukatpally etc. For the advancement of infrastructure in the city, the government is building a skyscraper business district at Manchirevula with a 450 m supertall APIIC Tower at its centre, which upon completion may be the tallest building in India. Hyderabad city is today known for its IT and IT Enabled Services, Pharmaceuticals and Entertainment industries. Many Software firms, call centres, Business process outsourcing (BPO) firms, dealing with IT and other technological services were set up in the 1990s making it one of the major regions for call centre setups, technology development and KPO hubs in India. The development of a township with state-of-the-art facilities called HITEC City prompted several IT and ITES companies to set up operations in the city. An aggressive promotion of growth in this area has led civic boosters to call the city “Cyberabad”. Hyderabad has also been referred to as the second Silicon Valley of India next to Bangalore. There have been extensive investments in digital infrastructure within the city promoting the setting up of several campuses by a vast array of companies within the city. This list includes several multinational corporations having established their development centres in the city. The major areas where such campuses have been set up are Madhapur and Gachibowli.

The Andhra Pradesh State Road Transport Corporation runs a fleet of 19,000 buses, the largest in the world. Hyderabad has the third largest bus station facility in Asia, with 72 platforms for 89 buses to load passengers at a time. Officially named as the Mahatma Gandhi Bus Station, it is locally known as the Imlibun Bus Station. The yellow colored Auto Rickshaw usually referred to as an “auto”, is the most widely used transport/ taxi service and has flag down minimum fare of Rs 12 for first 1.5 km and then Rs 7 per km. Radio Taxis by private players have provided a luxury travel in the city but are expensive. Hyderabad is connected to the rest of the country by National Highways—NH-7, NH-9 and NH-202.Hyderabad is well connected to remaining parts of the state. Like other cities, Hyderabad suffers from traffic congestion. Completion of the Inner Ring Road and construction of the Outer Ring Road encircling Hyderabad city is also underway and is touted to make travel in the city easier. Many flyovers and underpasses are also being constructed to ease traffic congestion in the city.

Hyderabad has a combination of light rail transportation system known as the MultiModal Transport System (MMTS) and suburban railway system which offer connectivity between rail and road transport for the facility of the commuters. MMTS provides connectivity to all major parts of the city, and is a suitable alternative for those who want to avoid road traffic. The South Central Railway headquarters are located at Secunderabad. The three main railway stations are Secunderabad Railway Station, Hyderabad Railway Station (Nampally) and Kachiguda Railway Station. Secunderabad is one of the biggest railway junctions and connects Hyderabad to the rest of the country. The Hyderabad Railway Station at Nampally is the main station for the city, providing connectivity to all other parts of the state as well the country. There are a few areas where the South Central Railways has looked into the access for Persons with disabilities in terms of providing for a ticket counter, which is accessible for wheel chair users and has the window at low level in all the stations where the local trains travel, parking place for persons with disabilities specifically at all the three major railway stations mentioned above. As the Secunderabad Railway Station is the main station for Northbound trains, the waiting rooms on the first platform of the Station, Platform No. 1 have been made accessible by having a separate Rest Room for Persons with Disabilities. Also there is water faucet on this Platform which can be accessed by the Persons with disabilities. But the problem is that people with disabilities hardly ever travel by the local trains, the Rest Room in the Waiting Room at Secunderabad is not but according to the standards for barrier free environment and accessibility by the UN or Central Government of India and the one single faucet for people with disabilities is in an insignificant corner of the First Platform ad as such able bodied let alone people with disabilities, know of its existence, and is a glaring example of eyewash by the Central Government.

The Hyderabad Metro has been planned and constructional activity will begin by the end of 2009. The Metro is expected to ease the burgeoning traffic in the city. The Metro will travel in three different routes, with a stretch of 71 km approximately, extending even to the outskirts in the second phase of its construction. There has been an unprecedented increase in the number of passengers leading to increased air traffic. The Airport at Begumpet was unable to cope up with the situation and was shut down on 22 March 2008. The new state-ofthe-art Rajiv Gandhi International Airport opened on March 2008 by Sonia Gandhi at Shamshabad, southwest of the city. The airport has the second longest runway in India next to Delhi and caters to the high passenger and cargo transits. An express flyover at a length of 11.5 km is being constructed from Mehdipatnam to Aramgarh for providing dedicated high speed travel to the airport, is the lengthiest flyover in India. A proposal for extending the MMTS to the new airport is under consideration. There are three wide roads leading to the new airport from the city and modern taxis can shuttle passengers between the city and the airport. The Outer Ring Road between Gachibowli and Shamshabad will also serve as an expressway to the airport.

The City has evolved into a cosmopolitan society due to the heavy presence of the Information technology Industry while maintaining ancient culture and traditions. Historically, Hyderabad has been the city where distinct cultural and linguistic traditions of North India and South India meet. Hyderabadis, as residents of the city are known, have developed a distinctive culture which is a mixture of ancient Hindu traditions of Telugu people and Islamic Culture.

Sources: Wikipedia

Secondary data collected by the Monitoring Assistants during the Field Study from the respective local Mandal Revenue Offices at the three sites.

People Interviewed

Interviewees were selected using the snowball technique, which is a non-probabilistic sample most used in qualitative studies to select hard-to-reach populations. At the end of each interview, each interviewee would refer the monitor to a new potential participant for interviewing. All interviews conducted were tape recorded, after obtaining the signed informed consent of the Interviewee. Monitors provided the complete details as to what the study was about, and how the material would be used later by the project personnel, and only after ensuring that the potential interviewees understood the purpose of the study was a signed agreement taken from them.

Interviews were fully transcribed, coded and analysed using NVivo 7, a software that supports qualitative research. Data analysis followed a coding scheme provided by DRPI, which enabled an exploration of the experiences reported by interviewees in terms of their human rights implications.

Details of the Interviewees

168 persons with disabilities were interviewed as part of the field study of which 112 Interviews were selected for data analysis. A total of 59 interviews were from the villages of the Vishakapatnam District, 26 interviews from Kurnool town and 28 interviews from Hyderabad City. The reasons for not selecting the other interviews were:

  1. Monitoring Assistants while helping the Monitors, conducted the interviews themselves and the interviewee was not being allowed to share his or her experience, and respond to the questions.
  2. The quality of recording was very low and the interviews were interrupted by parents and neighbors of the Interviewees
Interviewees according to gender
Gender Number
Female 47
Male 66
Interviewees according to age
Age range Number
18-25 35
26-40 51
41-55 19
56-70 8
70 + 0
Interviewees according to region
Region Number
Hyderabad (Urban) 28
Kurnool (Semi-Urban) 26
Vishakapatnam (Rural) 59
Interviewees according to type of disability
Type of disability Number
Mobility 87
Sensory – Blind and Deaf 26
Interviewees according to type of housing
Type of housing Number
Thatched 29
Tiled 34
Concrete 15
Rented 35
Interviewees according to level of education
Level of education Number
School (Completed)1 46
Under-Graduation 08
Graduation + 18
Uneducated 41
Note #1
The education system followed in Andhra Pradesh is as follows: Schooling is completed with the 10th Class Under-Graduation is for two years after Schooling, with subject specialization, which is also known as Intermediate or Junior College Graduation is for 3 years after Under-Graduation with subject specialization Post-Graduation is for 2 years, after Graduation, with specialization in One Subject, after which comes research at two levels, of M.Phil, for a maximum of 1½ to 2 years and Ph.D (Doctorate) for a minimum of 3 years
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Discussion of Findings Part 1: Human Rights Principles

During the interviews, participants were asked to elect up to three recent events in their lives which illustrated the realization or denial of their human rights. Situations reported encompassed all spheres of life: from family to community, from education to work, and even relationships with the government and other official entities. To monitor the extent to which respondents had been able to realize their human rights, these reports were then analyzed through the lens of human rights principles. This analysis determined whether or not reported events had created opportunities to enjoy autonomy, non-discrimination, equality, dignity, inclusion and respect for difference. In what follows, the results of this inquiry are presented and discussed.

Autonomy

The principle of autonomy comprises ability to make choices and decisions on issues that affect one’s own life (including choosing forms of supported decision-making).

Interviewees experiences of autonomy
Experience Number of Interviewees Percentage of Interviewees
Lack of Autonomy 27 24.1
Self- Determination 38 33.9

Twenty seven interviewees reported that they lacked Autonomy in their everyday lives in various respects. That is, 24.1% of Interviewees confided that they lacked Autonomy, as in the following examples:

To date, I have not taken any decisions in life.

No one listens to what I have to say. I am really depressed that no one in my house wants to take care of my needs.

A larger proportion however, thirty eight interviewees or 33.9% of the sample expressed an ability to make decisions on their own and determine issues relating to themselves during different stages of their lives. The following quotes are just a few examples

I have struggled all through my life and if I am here today, in this position, it is only through my hard work. I was also a person who suffered acute poverty but today am in a position to feed another.

I began to think why cannot I also go out like the others can, why can I not be like the others, and decided that I must change my behavior and thus have I learnt to go out into the world.

I always think that we as disabled should be in a position where we give strength and confidence to others in life.

Discrimination

Discrimination on the grounds of disability is a serious human rights violation, prohibited by all international human rights instruments including the UN Disability Convention. Discrimination in the context of disability is understood to involve violation or denial of fundamental human rights on the basis of disability.

Interviewees’ experiences of discrimination
Experience Number of Interviewees Percentage2 of Interviewees
Discrimination by Family 53 47.3
Discrimination by Society 64 57.1
Discrimination at School 23 20.5
Discrimination at Workplace 30 26.78
Discrimination due to Poverty 32 28.57
Discrimination by Government 59 52.67
Note #2
The percentages mentioned here add up to more than 100% for all forms of Discrimination because the Interviewees had expressed that they had faced more than one form of discrimination categorized here, in their lives, during the interviews
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Sixty four Interviewees in this study expressed that they had faced several forms of discrimination in society and community at large because they were persons with disabilities. In other words 57.1% of the Interviewees said that they had to face social discrimination in their community and in society at large, at different stages of their lives, because of their disabilities:

People make fun of me because I am short, even children do not hesitate to make fun of me and of course that is insulting … The auto rickshaw drivers tease and make fun of me. They invite me to enter their auto as if I were a street walker and pass me by yelling out Shorty! Shorty!

How can we feel respected? When we are passing by if someone were to call, hey you, of course you lose respect in front of others, it is because we are disabled that they are calling us like this.

When dealing with governmental authorities and public services fifty nine Interviewees reported having faced discrimination on the basis of their disabilities, as the quotes that follow well illustrate:

When we go to get the concession for bus travel, they keep putting hurdles in our way, saying you already have a job so why do you need this concession. Everyone in society belittles or insults me because I cannot see.

I begged the government officials as well as even the police but to no avail. It would really have been so good if the government had come forward to help people like us but as it did not, I am at present left with no livelihood at all.

In addition to communities and the larger society, and governmental authorities, families were found to be sites of discrimination for many respondents. Indeed 53 Interviewees (or 47.3%) said that they had to face discrimination from their own family members during all or part of their lives, as the next quotes denote:

No matter how much work I do or struggle hard, there is no use at all. I am disabled, I cannot use my legs so they all look down upon me, no matter what I do. They never give me any money to spend for myself but they will make me do all kinds and amounts of work, and on top of this I have to hear all kinds of swear words, abuses. They tell me, I will get you killed you whore, you slut.

The worst is in the house itself. If I go to cook dinner or lunch when some relatives come to visit, my own family members say, why are you pushing your way into the kitchen like this, just be still and sit in one corner, why do you come traipsing here, saying I will do this, I will do that.

Work in our societies is an important source of income, respect and sociability. For 30 Interviewees (or just over one quarter of the participants in this study), however, work has been associated with experiences of discrimination, as the following quotes illustrate:

I worked in the Pepsi Company at Guntur but throughout the period when I worked there, I was not paid proper wages … I had to keep changing so many jobs because none of them paid me the income for the work that they made me do.

If I do not wipe the floors properly, she takes the broom to me and beats me up. When I ask her why she is beating me up, she says why do you not do the work properly when I tell you to do it? My legs cannot take too much of work and tend to collapse quite often. I keep thinking what is this life of mine, why this bonded labor, why do I have to bear this torture of being shouted at and being beaten up, what mistake or wrong did I do that I deserve this, I keep thinking about this and feel miserable about my life.

Education is instrumental for processes of inclusion and social participation. For a large number of interviewees in this study (20.5%) however, access to education has been marked by incidents of discrimination from their class mates, teachers and administrative personnel, as revealed in the following excerpts:

I had to meet the principal there who spoke very rudely, saying this is a blind person, why does she need to have any education. This was an experience that I would never forget in my life.

But even my teachers were under the feeling that why should we tell this blind girl everything, what is the point of teaching her or training her, is she going to teach or train anyone else in the future, what use would this education be to her, this was their way of thinking.

Poverty is perhaps the worst form of discrimination and exclusion. Over one quarter of the respondents (32 Interviewees) felt that due to both their poverty and their disabilities, they had to face several forms of discrimination in their lives:

I think those who are facing the same kind of problems will give me respect and are kind to me whereas those who are in a much better financial conditions will not obviously show any respect to me. All my problems, both in society and family, boil down to my poverty.

I did not have anything else but problems and difficulties. I have always lived life with difficulty, never had enough food to eat per meal, and so if I was able to get a full meal in a day, it was indeed a very happy occasion but I never got that opportunity yet.

Equality

Being treated on equal terms with all other members of society is a fundamental human right. Equality encompasses having own differences respected and disadvantages addressed and being able to participate fully in equal terms.

Interviewees’ experiences of equality
Experience Number of Interviewees Percentage of Interviewees
Equality in Family 10 8.92
Inequality in Family 13 11.60
Equality in Society 8 7.14
Inequality in Society 13 11.6
Equality at School 2 1.78
Inequality at School 6 5.35
Equality at Workplace 2 1.78
Inequality at Workplace 7 6.25
Equality in Government 1 0.89
Inequality in Government 4 3.57

Of the over 100 persons with disabilities that were interviewed for this study only 10 of them reported significant events where they felt treated on equal terms with other members in the family, that is, only 8.9% said that they were treated equally by the other family members.

As far as my family is concerned even though I was earning only 200 Rupees earlier when I was working as a boy, my family members would give me all the love and respect as if I was an equally contributing members of the family.

Only 8 Interviewees out of 112 persons said that they were treated equally by the others in society, that is, 7.1% of Interviewees said that they were treated on par with the others in society and their community irrespective of their disability.

No matter how many problems I might have, if I go out into the society everyone treats me on par and equal to the rest of the society.

Family is the first space where persons with disabilities expect being treated equally with the others but in fact 13 Interviewees said they were not treated at all equally along with the other family members in the family, that is, 11.6% of Interviewees said they were not treated equally with the others in the family because of their impairment.

I know I am kept away and excluded both at home and outside even. I can most definitely say it was my family members who excluded me from themselves first. Now if my own family treats me this way, would not the outsiders do the same?

If any of my family members falls ill, they do go to the local hospital but if I become ill, they give me some tablet or the other and wait for the illness to come down but do not take me to the hospital.

All citizens of a country have a right to participate equally in society, where his/her differences are respected but 13 Interviewees said that they were not treated on par with the others in society and their community, 11.6% of Interviewees said that they were not treated equally with the others in society and their community because of their disabilities.

See, a disabled man is like a milking cow that no longer produces milk. How long is a cow like that given fodder, a physically disabled man like me is also the same, all the disabled are like that cow, useless for everyone.

The outsiders do not treat me like a human being at all, they think this man is good for nothing and useless, whereas we do good work and are useful to one and all. In fact, they consider me to be equivalent to a paper plate that has already been used up for eating and is thrown aside.

7 Interviewees said that they were not treated on par with the others in their workplace, that is, 6.25% of Interviewees said that they were not treated equally with the other workers and employees in their respective workplaces just because of their impairment.

People mock me, they make me do more work than I need to and are paying me much less than the others, when they work less than what is expected of them in a day.

I would like to do some work as a laborer, they do not give me any work. They keep me away saying what can you do, you are so weak.

In sum, persons with disabilities in this study were found to report greater incidence of experiences of inequality than equality, across all contexts.

Dignity

Right to Dignity is at the core of Disability Rights as stressed under the UN Convention on the Rights of Persons with Disabilities and shows the impact of particular life experiences on their perceptions of self-worth, of being respected and valued in her/his experiences and opinions and able to form opinions without fear of physical, psychological and/or emotional harm.

Interviewees’ experiences of dignity
Experience Number of Interviewees Percentage of Interviewees
Positive Dignity in Family 51 45.53
Negative Dignity in Family 48 42.85
Positive Dignity in Society 24 21.42
Negative Dignity in Society 69 61.60
Positive Dignity at School 5 4.46
Negative Dignity at School 7 6.25
Positive Dignity at Workplace 4 3.57
Negative Dignity at Workplace 8 7.14
Positive Dignity by Government 3 2.67
Negative Dignity by Government 10 8.92

Dignity of an individual with disabilities is fundamental to the identity that negotiates the respect of self vis-à-vis societal power relations effectively. As can be seen above, in all spheres of social interaction considered, with the exception of Family, Persons with Disabilities have had to face experiences of erosion of their Dignity rather than positive experiences. Altogether, 69 Interviewees, or more than half of the persons interviewed, reported incidents where their dignity had been insulted and injured, that is, 61.6% of Interviewees stated that they faced situations where their dignity was hurt very badly because of their impairment. Here are some of the stories that respondents shared:

The society treats those who are not disabled quite well but does not even care for those who are disabled, does not even acknowledge their presence.

My neighbors and others in my community think that this girl whose legs don’t work has been living with her sister and brother-in-law for years together and is living off of them.

By saying, hey you cripple, come here, they are at one shot, showing us that our place is somewhere at the bottom of the society.

What can even parents do or say when the entire society, relatives, family members everybody is not only neglecting or humiliating the disabled people in their midst and keep pushing them away and excluding them?

The society does not listen to a word I say, and even then if I were to force myself to be heard, they are totally careless and negligent toward me.

People like me are treated like dogs in society.

Dignity of a person with disability in the family is a prerequisite for self-confidence and the integrity of the individual but 48 Interviewees, that is, 42.9%, said that they had to face incidents where their right to dignity was violated by their own family members who insulted and humiliated them and hurt their dignity very badly only because of their impairment, as the following excerpts illustrate:

My own father and younger sister have spoken like that. I heard my sister tell her friends and our neighbors that she is a cripple, a lame, what work can she do.

And when my relatives say all these things insulting me, I think if I had been born in their house how would they have reacted, how would they have felt if one of them had been a disabled person like me.

When my husband is really angry with me, he says, who would have married you, you are a disabled woman, it was only because you are earning a fat income that I condescended to marry you.

My own elder sisters pass comments like that, they say this girl is only a little younger than us and still remains unmarried whereas our children have already grown to marriageable ages and they laugh at me, when passing on such comments.

If I remain in my own house, they would all beat me to death. Even now they all beat me at the smallest excuse and threaten to kill me and bury me deep in the earth.

While a large number of respondents indicated experiencing lack of dignity in the context of family life, almost half of the interviewees (45.5%) also found in the family a source of support, respect and dignity.

My wife also says, as long as I am alive, I will keep you alive for myself, we will live, and I will care for you as long as you live. I asked her point blank, see my legs are like this and I cannot do any work properly … my wife says I came knowing about the condition of your legs so I will be with you until the day you die.

I have three maternal uncles who are very loving toward me. They take me to their homes whenever some festival comes and they buy me clothes and give me good food.

When my mother becomes ill, my sister-in-law does everything for me. Of course if I defecate or something like that it is still my mother who cleans up but my sister-in-law does bathe me, feed me, she does work like that.

But my parents have been quite supportive of me. There is a saying that bad gold always has a way of coming back to the goldsmith, my parents said even though I came back, they were still strong enough to take care of me and they categorically stated that I will stay in their house.

Inclusion

People with disabilities have the same right as anyone else to be fully included and participating in the community and to be recognized as an equal participants and have their own needs understood as integral to the social and economic order and not identified as special needs.

Interviewees’ experiences of inclusion
Experience Number of Interviewees Percentage of Interviewees
Inclusion in Communication 28 25
Exclusion in Communication 45 40.17
Inclusion in Physical Environment 2 1.78
Exclusion in Physical Environment 30 26.78
Inclusion in Education 10 8.92
Exclusion in Education 14 12.5
Inclusion in Government 7 6.25
Exclusion in Government 9 8.03
Inclusion at Workplace 1 0.89
Exclusion at Workplace 14 12.5
Inclusion in Religion 2 1.78
Exclusion in Religion 1 0.89

However, more than one-third of the persons with disabilities interviewed (45 interviewees) reported that they had to face many difficulties in communicating their ideas and opinions and thus were excluded on the basis of their disabilities,

I do feel excluded, which even the others in my village talk about, they say this man does not have the use of his legs so he is always neglected, his own brother has sold their jointly held land.

But there are some who deliberately do not tell me just to humiliate me, then it does hurt me, it is very painful.

You cannot play with us, you cannot work with us, that is what the ‘normal, good’ people think so they do not make friends with people like me.

Often is the lack of accessibility in the physical environment that works to produce the exclusion, segregation and isolation of persons with disabilities, as 30 Interviewees (26.8%) have shared:

I feel if I were non-disabled and not like this, I would be able to go and travel about like all the others.

There are some friends, in fact, who suggest that I should stay on the ground floor and that they would go up to the function on the higher floor. This is when I really feel bad that I am disabled and wish I was also like them, without any form of disability.

It is because I am short. When traveling by public transport bus, if the bus stop for the disabled in one place the driver stops the bus quite far away from that spot. As soon as I were to ask the driver or conductor something they become irritated and abuse me.

The offices were most often on the higher floors and it was very difficult for me to climb all those stairs and get down them again.

The education system at all levels must ensure that persons with disabilities have access to education but 14 Interviewees said that they had to face exclusion during their education at one time or the other on the grounds of their disabilities:

This other college is on the second floor and I have to climb 2 stories to enter the college, and I would find it very difficult to climb all the way up.

He said very casually was that I could attend the classes and continue my studies if I were interested or otherwise I could just leave the course. That is the kind of attitude of people toward disabled persons.

I had no other choice but to drop out of school, as I was unable to bear any longer the kind of insults and humiliation that were being heaped on me by both the students and administration.

Persons with disabilities have the right to earn a living from work they choose in a work environment that is open and accessible to all people. In spite of this, 14 Interviewees said that they had to face different forms of exclusion from others at their respective workplaces, that is, 12.5% of Interviewees said they were excluded from the others because they were persons with disabilities:

But the people around me would not let me do the work that I know I can do, and they refuse to give work even if I were to tell them confidently that I can do it.

My co-workers in the company would keep me away from themselves, they would think and often tell me this, how can this man be on par with us, how can he work with us as a coworker, how can he draw wages on par.

Because of this, no matter where I go, be it an office or a private company, they are all driving me out saying we cannot give you any work at all.

People with disabilities have the right to say what they think through Braille, sign language or other types of communication that they choose. As pointed above, 40%of the interviewees experienced exclusions in this area but nevertheless, 28 Interviewees said that they were able to communicate their needs to others in spite of their disability, that is, 25% of Interviewees said that they did not feel excluded at all in communication even though they had disabilities.

The workers here look after us very well. They take us to the Church once in a week and even our sister also comes and reads us a verse from the Bible and explains and discusses the same with us. Because of all these things, I feel happy… The workers in the hostel have always helped me.

Whenever there were some functions or some auspicious occasion, the others would not keep me away but take me along with them. I would always be in the forefront in these functions, knew where all the necessary equipment was, did most of the work.

I have never felt that way because I have not experienced such incidents with neither my family members, my relatives nor my friends, not even strangers, everyone has been behaving normally with me.

Respect for Difference

Just as there are diverse cultures, races, ethnicities, castes, sexes, classes, etc among the citizens of the country, there are people with disabilities in all these constituencies of people who have the same right as everyone else to be respected for their physical and mental whole.

Interviewees’ experiences of respect for difference
Experience Number of Interviewees Percentage of Interviewees
Being Disrespected 77 68.75
Being Labeled 80 71.42
Incidence 27 24.10
Being Respected 31 27.67

It is evident from the study that there is a lack of respect for bodily difference among the Indian population in general. 80 Interviewees (71.4%) reported that they were labeled with their disability name and called with it one time or the other in their lives,

Yes, they would comment about my walking, they used to find it funny, said I walked like a dog, and the children on the streets would utter these comments and some other children would be frightened to see me.

They call me, hey you lame cripple come here, hey you idiot come here. When they call me like that I get really angry as to why I should alone be called like this, and then I feel bad because it is after all because I am like this that they are calling me with all those weird names.

Though the culture of democracy is evolving, archaic values still prevail across the sociocultural and political hierarchies, and at times even economic status does not bring respect for the person with disability. 77 Interviewees said that they had felt disrespected by the way the others reacted to their disability, that is, 68.75% of Interviewees said that they had felt disrespected in their interactions with the others and their attitude toward themselves due to their disability.

I do feel as if I am being disrespected because, well they might want to do good for others like us but this is something that is quite demeaning to experience.

I approached them, the mother pulled her daughter away from me and told her that she must not come too close to me, that she would also be afflicted with the same problem. I felt horrible listening to her speak like that about me.

The experiences of discrimination and lack of respect by persons with disabilities do not stop at single instances. Consequently, when the incidences keep occurring continually, they tend to inferiorize the person with disability in engaging with his/her own space for an environment which is non-discriminatory.

Twenty-seven interviewees were able to recall several specific incidences where they were treated differently from the others, that is, 24.1% of Interviewees said they were able to recall many incidents when they were treated as being different during different points of their lives only because they had disabilities.

When my mother takes me to some marriages or functions, the others tell her, and that too in my hearing, your daughter has grown up so much, why do you go to the effort of carrying her all over, why don’t you leave her at home and come?

Added to all this is the behavior of people, especially men when I have to go out on my own and have to cross roads somewhere. The people who come forward to help me do not think of this as a good deed and make it into a chance always to touch me differently and to misbehave in every way possible. For me this is an inevitable, as I would have to take someone’s help in order to cross and for them it is a chance to behave as cheaply as can be, and there is nothing I can do about this, as I cannot do without the help or support of someone when I am out on the roads all by myself and this kind of experience is something I have had to face on several occasions in my life, not once or twice.

 

 

 

Discussion of Findings Part 2: Class, Ethnicity & Gender vis a vis Disability

Interviewees’ expressions of the role of class, ethnicity and gender
Experiential determinant Number of Interviewees Percentage of Interviewees
Class and Disability 9 8.03
Ethnicity and Disability 9 8.03
Gender and Disability 27 24.10

Class and Disability

9 Interviewees said that the class that they belonged to made a difference in terms of how they were treated as persons with disabilities though one interviewee did say that persons belonging to the poor classes are treated much worse than people with disabilities, and that was without respect and with discrimination. For example, one Interviewee reported,

Between a poor person and a disabled person, it is the latter who has to face lot of discrimination. They might have money and they might have education but that term disabled remains firmly in the minds of the people in society as something negative. They are treated as different.

Whereas the others all reported that the richer class persons with disabilities are treated much better, for example, one Interviewee said,

I am thinking that those who have money will be treated quite respectfully but the poor would not be treated too well and even I would not be treated with respect.

Ethnicity and Disability

9 Interviewees expressed that Caste has a role to play in their experience of being discriminated against, in addition to the discrimination experienced on the basis of disability. Here mention must be made that though the interviewees do come from different cultural backgrounds, when the question of ethnicity was posed to them, they understood it in the perspective of Caste3, which plays a predominant role in the Indian society. In fact, one of the Interviewees said that

Note #3
Though the people in Andhra Pradesh are divided into different ethnic groups, the presence of Caste supersedes every other cultural difference. The Caste or VARNA System had been introduced into the Indian society more than 3000 years ago by a man named Manu. The System was developed, at least at face value, to demarcate the roles and responsibilities as well as professions for the citizens of the society. So, it was decided that those who follow the quest for knowledge and spread the same were marked as Brahmins, those who take up the responsibilities of ruling the land and protection and administration of the same were marked as Kshatriyas. Those who were involved in trade and commerce of goods produced and mercantile business were called Vysyas.. Those who were involved in agriculture and production of different food grains as well as were involved in working as servants to the above three caste groups were marked as Sudras. This group of citizens were also involved in several artisanal professions like weaving, pottery, carpentry, washing, toddy tapping, etc.Now, those who were not yet ‘civilised’ then, those who were outside the purview of the City State, were called “Chandalas” and were cast off. They were as such deemed untouchable, as their main source of income and food was the removal of garbage and carcasses of livestock, as well as tanning and making of footwear. After Indian Independence, these communities were recognised as being the most marginalised and vulnerable by the founders of the Indian State and so the ethnic communities belonging to this caste were deemed as Scheduled Castes as were the different indigenous communities which were brought together under Scheduled Tribes. Today the Scheduled Caste communities call themselves Dalits, for a much more acceptable term than the word ‘Untouchables’. Though the Founding Father of the Indian Constitution, Dr. B.R. Ambedkar was himself a Dalit, the living conditions of the Scheduled Castes and even the Scheduled Tribes to this day continues to be that of being “Untouchables”, though the successive governments ruling the country and state have claimed to have brought greater development and improvement in the lives of the Dalits. (Source: Wikipedia)
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Most of my disabled friends are either from the Scheduled Class or Scheduled Tribe families.

One of the Interviewees also mentioned that irrespective of caste or religion, people with disabilities are treated differently, just because of their disability and said,

See, people belonging to the same caste and race and religion will help each other out but when it comes to the disabled, no one will cooperate with them. This is also hundred percent truth. If I were to compare my conditions in life with them, I know for sure that my condition is much worse and they are in a much better position.

Gender and Disability

27 Interviewees, both male and female, reported that they were treated much worse than women without disabilities and some of them said they had to face the double discrimination of being women as well as being women with disabilities. Of these 2 Interviewees said that they were treated worse than women or women with disabilities, though they were men, because of their disability, like the Interviewee who said,

If we were to compare the lives of women and disabled people in society, I must say they are treated much better than I am in society.

Women with Disabilities on the other hand reported

They will say, he was so broad minded to have married a disabled girl but she is so proud and high handed that she divorced from him. That is the reason why I do not tell everyone about my personal problems, because I do not know how they will react toward me. I am still stuck in this marriage perforce.

People who are much older than me and who are also fathers of children say they will marry me. The other men also say quite insulting things like we must bed this cripple, we should rape her. They try to deceive me saying hey lame duck, why don’t you come with me, I will take you to work. On the one hand, they say why don’t you find a good person and marry him and at the same time they say let us enjoy a night together. This is especially the case with the male relatives of my family, my cousins and others who speak with me like this

I think in fact I am treated much more cheaply by society than women. I have seen over and over again, when it comes to love or marriage regarding disabled persons, the average reaction of people in society is, why does this disabled woman need love and lovers? Is it necessary for this woman to marry now? The idea is that when non-disabled women themselves are having so many problems how can disabled women think of marriage. My disability itself is a disqualification for me to fall in love with someone, as I am less than human. The attitude of society toward disabled women is very indecent and cheap, that has been my experience and what I have seen.

The male co-workers, taking the opportunity of the bosses’ absence, come and sit next to the girls and want to know all kinds of personal and intimate details about us, knowing that we cannot move easily from our chairs and walk away like non-disabled women can.

Discussion of Findings Part 3: Responses to Abuse & Discrimination

Despite experiencing many forms of discrimination, abuse and violations of human rights, very few Interviewees did speak out that they responded in ways that they could, whether they distanced themselves from the incidents of abuse or took some form of action by reporting or even resisted the discrimination meted out on them, in one way or the other.

Interviewees’ responses to abuse and discrimination
Response Number of Interviewees Percentage of Interviewees
Acceptance 27 24.1
Distancing 11 9.82
Report or Legal Action 2 1.78
Resistance 2 1.78

The concept of Karma or ordained fate, is very strong in the Indian ethos and this is seen to manifest itself the most where any form of vulnerability, be it social or physiological / psychological is concerned (meaning, be it being born a woman, being born into a poorer class/caste or being born with a disability). Given this factor, it was found in the study that the persons with disabilities, be it from the Urban, Semi-Urban, or Rural areas, across the age groups, sexes as well as economic conditions have expressed that it was their fate that they were born with a disability, that God had willed it and there was nothing either they or others could do about it, that in fact the others were justified in abusing them because they had a disability. For example one Interviewee said,

They call me a lame duck, and say hey check out that cripple who is crawling by. I then think, after all they are not saying anything new, I have this disability so they will talk about it.

Or another person, who said,

I feel bad but what can I do, I have lost the use of my arm so I guess I deserve to be called with all kinds of names.

Another Interviewee puts the blame for having their disability on God thus,

This is my life. I am not supposed to have a wife and children, a family for myself. God is making me live this life for so long, a life like a dog’s and I really do not know for how long more I need to live like this. I cry every moment of my life that I am living now.

A reaction that comes close to acceptance is distancing oneself from the pain being inflicted by the others because a person is born or acquires a disability. As this Interviewee expressed,

I have come to the conclusion that instead of blaming each and everyone of the non-disabled persons for giving me this kind of treatment, it is better to change my own opinion about them and keep away from them as much as possible.

Or as another Interviewee put it,

So now I have decided that I will not go anywhere, why do I have to bear all this pain, it is better that I do not go at all, even though my relatives or friends do ask why I did not come to the functions.

Discussion of Findings Part 4: Reasons for Not Reporting

Although many of the persons with disabilities interviewed for this study reported having experienced various kinds of human rights abuses and violations, few had reported them to the authorities. The lack of knowledge on agencies or lack of contact with such bodies like lawyers/police or higher authorities like Courts could be some of the prominent reasons for the Persons with Disabilities not to report the kind of abuses they were facing, especially with government as well as society.

Interviewees’ reasons for not reporting
Reason Number of Interviewees Percentage of Interviewees
Corruption 1 0.89
Fear 7 6.25
Lack of Access 5 4.46
Lack of Financial Means 1 0.89
Nothing Would have Happened 21 18.75
Self-Blame 5 4.46

It can be seen from the Data that highest number of Interviewees decided not to report the abuse or discrimination they were facing because they were under a strong impression that nothing would have happened, no one from the society was willing to help them or the government officials were more often than not quite offensive. For example, one person says:

What will anyone do if I were to tell them also, my life is like a dying leaf on a tree, ready to die at any moment and fall down, that is how my life is too.

Or another person who has retreated very deep into self-blame,

I cannot pick a fight with them or shout at them, no matter what they say or not, my life is not good that is why I have to endure all this pain and suffering, that is what I think.

As far as government personnel are concerned, some of the discrimination and abuse people with disabilities have to face in the offices can be exemplified thus,

If I were to protest their word, they say a few more strong words, they react even more strongly, saying, hey you girl, shut up, don’t say anything, you don’t have any legs, you be careful how you use your mouth.

The other strong reason for respondents not to report the abuses suffered from the others is because they feared the consequences of revealing their conditions of lives to others, like this person who said,

I do not speak to my parents about any problem that I might face because I am afraid they would beat me up. That has been my experience earlier when I did share with them my problems, I was beaten up several times by them, and whenever they behave like that I feel so depressed that I feel like killing myself.

Or this person who did not report an abuse experienced at work place,

If I fight this kind of argument then I would no longer be called for work also. So I do not argue with them and take whatever wages they are willing to give me.

Self-Blame and Lack of Access were the other reasons which were cited by the Interviewees but there are very few incidences of the same. When it comes to Lack of Financial means or Corruption are concerned, there are not more than one or two incidents of the same reported.

Self Blame: I thought this is how my life is going to be, how it is going to go on for the rest of my days, this is what I have been fated by God, this is my Karma, and felt quite wretched.

Lack of Access: I did not meet a person who could understand what I wanted to say, there was no one to ask me anything so I did not tell anyone anything, I am quite happy to go anywhere and talk but I did not meet anyone who could speak the sign language, so that they can understand me.

Discussion of Findings Part 5: Systemic Roots of Discrimination

In this study we were interested not only in monitoring the experiences of discrimination and human rights violations of persons with disabilities in India but also to collect their views on the factors that cause the disadvantage faced by this group of the population.

Though there are 4 important legislations, mentioned above, enacted by the Government of India to address the issues of Persons with Disabilities, none of these legislations indicate punitive action. The reasons stated by the Government is that as there are other legislations meant for the citizens of this country which stress on punitive action in case of discrimination, there is no necessity to emphasize the same in the legislations meant to redress the issues of persons with disabilities specifically.

Interviewees’ expressions of the systemic roots of discrimination
Systemic Root Number of Interviewees Percentage of Interviewees
Economic 51 45.53
Legislative 2 1.78
Social 7 6.25

2 Interviewees pointed out inadequacies in current legislation, notably around access to the right to vote, as being one of the root causes of the systemic discrimination they experience in Indian society. . As per the Constitution of India, every citizen has the Fundamental Right to Vote, but in reality, for Persons with Disabilities, this right is being denied quite often, as reported in the following excerpt:

When there are elections and there is a need to vote for a representative, I really cannot go there could I? if we were given some form of transport and were taken to the spot where the elections are being held then I would also be able to vote because I know that I have the right to vote and that I have to make use of it. The persons who stand for elections should provide some transport for us to go and vote, otherwise we cannot go by ourselves. So when we do not go to vote, they treat us like outsiders and as if we have committed a sin or something and are insulted.

And the problem does not stop there but continues where the person said,

They said, you did not vote for me so I will see to it that your name is removed from the pension list, which meant that I had to face a whole new problem all over.

The main reason for discrimination though, which was cited by as much as 51 Interviewees, was Economic, and social roots for discrimination were cited by 7 Interviewees. The following citations only exemplify the various forms in which economic discrimination can work:

I do not like being a dependent but I am unable to get a proper job so that I could become independent.

Well, a disabled person who is economically stable and steady is treated on way in society and a poor disabled person is treated completely differently. In this instance, I must say it is the amount of money a person has and not his or her disability that takes precedence in how a person is treated in society, either with respect or negligence.

I was unable to continue my education because of these economic problems. After the completion of my Graduation I worked in a school for 4 years as a Hindi Teacher but I was paid much less than my other co-workers because I was a disabled person.

I am facing these conditions and incidents because I am a cripple, a disabled person. Other than this, I have to face economic problems, poverty, added to which there is no one at all who is willing to extend some form of support to me or the other. They all hesitate thinking even if we were to give him some monetary support is he in a position to return the money, to repay it back, and so they back out from helping me.

I want to continue to study, but if I have to study, I need money to pay for the examination fees and as there is no money, I cannot continue my education. That is my life at present.

Listening to all this, my mother-in-law comes home and begins to torment me saying I did not bring a paisa of dowry when I got married. We are two girl children for my parents and already their economic conditions are not all that good, so where will they get the dowry amount to give their daughters.

I am still continuing to endure the problems in my life. I feel desperately that I should be the bread winner of the family, that I should be the one to earn an income but I am unable to do any kind of work. I have three daughters and a son and none of them are married yet. I would have been able to take better care of my children and their future if I were like everyone else, if I were able bodied. As I am not well at all, I am unable to do anything for the good of my children.

Even if we wanted to do some work, there is no work to be found here, there are no other sources of income either. As such there is no source for food for us too, there is no money, and how were we to live, that is my one constant worry. My parents really struggle a lot for me.

Our village is situated right in the middle of steep hills and no one from outside ever comes here and we do not have enough economic stability for us to go out.

If we had that kind of money, we would have gone till the District Headquarters and would have got myself checked in a big hospital there but we did not have that much money to spare. We even tried some of the herbal/natural medicine of the tribal people.

Discussion of Findings Part 6: Intersectional Analysis

The following is a detailed analysis of the results obtained for each of the Human Rights principles of Autonomy, Dignity, Inclusion, Equality, Discrimination and Respect for Difference across the attributes of Sex, Age, Housing, Type of Disability, Region and Education. The tables enable us to analyze the similarities and differences among various groups of Persons with Disabilities in relation to their experiences of Human Rights violations as these took place in the contexts of Family, Society and Government. The first Human Right Principle to be analyzed is Autonomy.

Autonomy

(a) Autonomy by Age
Interviewees’ experiences of autonomy by age
Experience Aged 18 to 25 Aged 26 to 40 Aged 41 to 55 Aged 56 to 70
R% C% R% C% R% C% R% C%4
Self-Determination 34.21% 65% 52.63% 62.5% 7.89% 37.5% 5.26% 40%
Lack of Autonomy 25.93% 35% 44.44% 37.5% 18.52% 62.5% 11.11% 60%
Note #4
R% – Row percentage of the number of Interviewees per Issue. C% – Column Percentage of the Number of Interviewees per issue given that the distribution of Interviewees is uneven across groups, both row and column percentages are presented to allow a more accurate analysis of the data
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In this sample, experiences of self-determination were reported in larger numbers than experiences of lack of autonomy. Since the large majority of respondents in this study were in the age groups 18-25 and 26-40, not surprisingly this study found a higher percentage of interviewees with greater decision making powers, Self-Determination and Autonomy in these groups than among those who were 41 to 70 years. Regarding access to decision making powers one person said that:

I lost the use of my legs when I was three years old and then when I gradually developed blindness, many people in my circle refused to accept me or to even look at me. That was when my grandfather took me and left me to fend for myself in a hostel, in fact more or less got rid of me there. From that day when I was pushed into the hostel, I took inspiration from each and every instance of exclusion and moved forward in life.

(b) Autonomy by Disability
Interviewees’ experiences of autonomy by disability
Experience Mobility Disability Sensory Disability
R% C% R% C%
Self-Determination 73.68% 60.87% 26.32% 52.63%
Lack of Autonomy 66.67% 39.13% 33.33% 47.37%

As can be seen from this table, in this study persons with Sensory Disabilities were found to be less able to exercise decision making when compared to mobility impaired persons. In fact 60.8% of Persons with Mobility Disabilities reported experiences of self-determination whereas only 47% of People with Sensory Disabilities did. For example one respondent shared:

Well, problems are that I cannot do any sort of work, simple or complicated. I do not have eye sight. All that I am waiting for is my death, which I will embrace willingly. I cannot explain my misery to anyone. It is difficult for me to move about, I cannot get drinking or any other water from outside, I cannot cook for myself, it is with great difficulty that I can bathe and get the clothes to wear, it is a bigger problem for me to go out to defecate, every little thing is a problem. There is no one to look after me if I were to fall ill. If I have to defecate, I have to wait for one of the children around to come so that I can hold on to them and go and complete my work. I cannot tell any of the adults as I feel too shy and ashamed, which is also why I do not ask any of the outsiders for help.

(c) Autonomy by Education
Interviewees’ experiences of autonomy by education
Experience School Undergraduation Graduation or higher Uneducated
R% C% R% C% R% C% R% C%
Self-Determination 47.37% 62.07% 7.89% 60% 28.95% 78.57% 15.79% 35.29%
Lack of Autonomy 40.74% 37.93% 7.41% 40% 11.11% 21.43% 40.74% 64.71%

The ability to exercise self-determination appears somehow related to level of education. Indeed, it has been found in this study that only the Uneducated Persons with Disabilities reported that they lack Autonomy more often than they experience decision making powers,

I wanted to go to school but my elder brothers would go to work and so there was no one left to take care of me, so I dropped out of school when I was 5 years old. I am even now quite interested to study.

I really felt miserable and I thought why should I live anymore, everything is a problem, it is a problem to go anywhere, to continue my education and I really am very tired of my life.

Whereas, others who are educated, even if only till the School level, claim greater Autonomy:

I wanted to prove that I was as good as everyone else and that I could do anything as well or even better than others so I learnt music, the Tabla (a percussion instrument), embroidery, tailoring and even driving and I was able to get really good rank in all these subjects.

Look, if the visual impaired people like me get educated then they will be able to gain an identity or recognition in society, also they would know and begin to understand the way society functions and thinks.

(d) Autonomy by Region
Interviewees’ experiences of autonomy by age
Experience Urban Region Semi-urban Region Rural Region
R% C% R% C% R% C%
Self-Determination 31.58% 75% 31.58% 66.67% 36.84% 45.16%
Lack of Autonomy 14.81% 25% 22.22% 33.33% 62.96% 54.84%

Geographic location is also important to understand participants’ experiences of access to autonomy as a human right principle – Persons with Disabilities in the Rural areas expressed they had only minimal autonomy whereas persons living in semi-Urban or Towns said that they had lesser or only moderate levels of decision making powers. Persons with Disabilities living in the Urban areas expressed they had greater or maximum levels of Self-Determination of all the three regions of the state in the Study. Some of the reasons for these differences in regions as cited by the Interviewees were lack of sources of information, lack of access to higher education and institutional support.

I spoke with my Guru, here in the tribal region, about my problems but he said my problem was too far gone and he would not be able to give any medication for it.

The persons living in Rural areas who have had access to education and information on the other hand felt more empowered, like this Interviewee who said:

My respect is something I gain through the proper use of my tongue, my knowledge which I have gained through my education, that is how I get respect in society. Someone or the other in the village keeps coming to me to fill up some application or requisition or the other, to submit to some government office or the other, almost every day of the week.

(e) Autonomy by Sex
Interviewees’ experiences of autonomy by sex
Experience Male Female
R% C% R% C%
Self-Determination 71.05% 65.85% 28.95% 45.83%
Lack of Autonomy 51.85% 34.15% 48.15% 54.17%

Women with Disabilities have far lesser Autonomy regarding their lives when compared with Men with Disabilities in this Study, as can be seen from the table.

Nothing I say or do ever works in my house. Even if I were to say anything strongly, my mother-in-law says, you are a daughter-in-law whom we bought with our money, so you have to do what I ask you to. So, you see, I do not have any decision making powers in my house.

At the same time some Interviewees did report that they were able to take decisions. Regarding Self-Determination one Interviewee said:

I am a woman but now I think I have the strength and will to live, like a man.

(f) Autonomy by Type of Housing
Interviewees’ experiences of autonomy by type of housing
Experience Thatched Roof Housing Tiled Roof Housing Concrete Roof Housing Rented Housing
R% C% R% C% R% C% R% C%
Self-Determination 21.05% 50% 26.32% 55.56% 15.79% 66.67% 36.84% 63.64%
Lack of Autonomy 29.63% 50% 29.63% 44.44% 11.11% 33.33% 29.63% 36.36%

Persons with Disabilities who live in thatched roof, and tiled roof houses in the villages (which are found to a certain extent in Semi-Urban areas) said that they had lesser powers of decision making when compared to those who live in concrete roof and rented houses in the Semi-Urban and Urban areas. Type of housing can be taken as an indicator of class and economic power and therefore not surprisingly it appears related to ability to exercise some form of autonomy in personal life.

The levels of Self-Determination of a person living in Urban areas on the other hand can easily be gauged, for example from what this Interviewee said:

I am finding out the problems of others and telling them about my problems and how I overcame them, and give whatever advice I can. Now I have certain value and recognition in society. I feel really proud and happy about this. People tell me that even though you are disabled, a man needs lot of patience to accomplish some work and you have that kind of patience in large amounts. They also tell me that I have the strength of will to accomplish any work that I undertake.

Discrimination

(a) Discrimination by Age
Interviewees’ experiences of discrimination by age
Experience Aged 18 to 25 Aged 26 to 40 Aged 41 to 55 Aged 56 to 70
R% C% R% C% R% C% R% C%
DISCFAM5 24.53% 15.29% 50.94% 23.48% 16.98% 18.75% 7.55% 30.77%
DISCSCHO 65.22% 17.65% 30.43% 6.09% 4.35% 2.08% 0% 0%
DISCWK 33.33% 11.76% 40% 10.43% 26.67% 16.67% 0% 0%
DISCSOC 32.81% 24.71% 46.88% 26.09% 15.63% 20.83% 4.69% 23.08%
DISCGVT 28.81% 20% 44.07% 22.61% 22.03% 27.08% 5.08% 23.08%
POVERTY 28.13% 10.59 40.63% 11.3% 21.88% 14.58% 9.38% 23.08%
Note #5
The detailed description of each of the row names have already been given in the earlier section under Human Rights Principles – Discrimination
Return

Age groups vary largely in size in the sample. Therefore, one needs to look instead to column percentages to understand how age groups differed regarding their experiences of discrimination. According to the table above we can conclude, among other things, that:

  • For the youngest in the sample (those aged 18-40) discrimination by society seems to be the most common form of discrimination, whereas the oldest (those 56-70) encounter greatest discrimination within the family.
  • Discrimination perpetrated by the government officials and other authorities is an important form of discrimination for all age groups, particularly for those aged 41-55 years old
(b) Discrimination by Type of Disability
Interviewees’ experiences of discrimination by disability
Experience Mobility Disability Sensory Disability
R% C% R% C%
DISCFAM 81.13% 21.08% 18.87% 17.54%
DISCSCHO 86.96% 9.8% 13.04% 5.26%
DISCWK 73.33% 10.78% 26.67% 14.04%
DISCSOC 75% 23.53% 25% 28.07%
DISCGVT 76.27% 22.06% 23.73% 24.56%
POVERTY 81.25% 12.75% 18.75% 10.53%

The number of Interviewees with mobility disabilities (87) far outnumber the Interviewees with sensory disabilities (26). So, the column percentages were taken into account to understand what were the most common forms of discrimination faced by persons with Mobility and Sensory Disabilities within their own groups. The percentages clearly show that though the number of Interviewees vary greatly in number for the two categories, both the groups have said that they faced the highest forms of discrimination in society, then through the government and then family.

When I applied for a job either in the private or in government offices, and when I went to enquire as to how the application is moving forward, when I spoke to the officers there, they would tell me I cannot speak, I am dumb, you cannot do this job, so please go away.

Most of the time, the doctors would drive us out of their rooms because they would not understand our signs. I would not understand what to do and suffer all the more, my ailment on one side and this misunderstanding of our attempts to communicate with the doctor on the other.

So, society will only consider those who can see as humans and does not even think I am human. But I say, everyone can see the light but how many can see darkness and live with it?

(c) Discrimination by Education
Interviewees’ experiences of discrimination by education
Experience School Undergraduation Graduation or Higher Uneducated
R% C% R% C% R% C% R% C%
DISCFAM 41.51% 17.89% 3.77% 9.52% 5.66% 7.14% 49.06% 34.67%
DISCSCHO 47.83% 8.94% 21.74% 23.81% 21.74% 11.9% 8.7% 2.67%
DISCWK 40% 9.76% 3.33% 4.76% 26.67% 19.05% 30% 12%
DISCSOC 51.56% 26.83% 9.38% 28.57% 15.63% 23.81% 23.44% 20%
DISCGVT 50.85% 24.39% 8.47% 23.81% 18.64% 26.19% 22.03% 17.33%
POVERTY 46.88% 12.2% 6.25% 9.52% 15.63% 11.9% 31.25% 13.33%

All persons with disabilities reported that they faced the most discrimination from society and government, with only minimal differences in percentages. The uneducated persons with disabilities (34.67%) and persons with disabilities who have completed just their schooling reported facing (17.89) discrimination from their family. The point of interest here is that undergraduate persons with disabilities were the only ones to report discrimination at School in high percentage whereas the Graduate persons with Disabilities included discrimination at workplace in high percentages.

I had to face many problems when I was at school here. Initially, the administration of the school refused to join me in their school, and they stated very clearly that they cannot join a disabled child in their school, that it would not look good for their school … after that also, once I joined school, they would say all kinds of hurting things to me, making sure that I would feel hurt. They would not treat me in the same way that they treated the other non-disabled children.

If I were to go to school, even the teachers there were highly negligent towards me. In fact, initially the school teachers did not like the idea of my joining the school at all and resisted it … all the other children in the school would look down upon me and tease me a lot … When the people around me would look at me and laugh and taunt at me continuously, I could do nothing else but drop out of school.

(d) Discrimination by Region
Interviewees’ experiences of discrimination by region
Experience Urban Region Semi-urban Region Rural Region
R% C% R% C% R% C%
DISCFAM 16.98% 14.29% 16.98% 13.04% 66.04% 27.13%
DISCSCHO 4.35% 1.59% 39.13% 13.04% 56.52% 10.08%
DISCWK 30% 14.29% 20% 8.7% 50% 11.63%
DISCSOC 23.44% 23.81% 31.25% 28.99% 45.31% 22.48%
DISCGVT 28.81% 26.98% 30.51% 26.09% 40.68% 18.6%
POVERTY 37.5% 19.05% 21.88% 10.14% 40.63% 10.08%

As the table above shows, the most common forms of discrimination reported by interviewees in urban and semi-urban regions are discrimination by society and through government officials and other authorities whereas interviewees in the rural region reported higher incidence of discrimination within the Family.

(e) Discrimination by Sex
Interviewees’ experiences of discrimination by sex
Experience Male Female
R% C% R% C%
DISCFAM 41.51% 14.97% 58.49% 27.19%
DISCSCHO 47.83% 7.48% 52.17% 10.53%
DISCWK 56.67% 11.56% 43.33% 11.4%
DISCSOC 57.81% 25.17% 42.19% 23.68%
DISCGVT 64.41% 25.85% 35.59% 18.42%
POVERTY 68.75% 14.97% 31.25% 8.77%

This study found a gender pattern in experiences of discrimination. Women with Disabilities reported facing more discrimination from their family members and in society perhaps because they are discriminated twice over, due to patriarchy and dependence. Men with Disabilities on the other hand report facing highest forms of discrimination from the government and society.

(f) Discrimination by Type of Housing
Interviewees’ experiences of discrimination by type of housing
Experience Thatched Roof Housing Tiled Roof Housing Concrete Roof Housing Rented Housing
R% C% R% C% R% C% R% C%
DISCFAM 32.08% 27.87% 33.96% 22.5% 7.55% 11.11% 26.42% 16.67%
DISCSCHO 17.39% 6.56% 52.17% 15% 13.04% 8.33% 17.39% 4.76%
DISCWK 26.67% 13.11% 30% 11.25% 13.33% 11.11% 30% 10.71%
DISCSOC 20.31% 21.31% 31.25% 25% 15.63% 27.78% 32.81% 25%
DISCGVT 20.34% 19.67% 22.03% 16.25% 18.64% 30.56% 38.98% 27.38%
POVERTY 21.88% 11.48% 25% 10% 12.5% 11.11% 40.63% 15.46%

As described in the table above, type of housing has some relation to the kinds of discrimination experienced. People living in thatched roof housing as well as people living in tiled roof housing reported facing greater discrimination in the family than in any other context of life. Conversely, those living in concrete roof and rented housing (who supposedly are those with higher income and greater economic power) reported greater incidence of experiences of discrimination in their relationship with the government and other official authorities as well as in society.

Equality-Inequality

(a) Equality-Inequality by Age
Interviewees’ experiences of equality – inequality by age
Experience Aged 18 to 25 Aged 26 to 40 Aged 41 to 55 Aged 56 to 70
R% C% R% C% R% C% R% C%
EQFAM 30% 12.5% 40% 14.29% 30% 25% 0% 0%
INEQFAM 38.46% 20.83% 46.15% 21.43% 7.69% 8.33% 7.69% 50%
EQSCHO 50% 4.17% 50% 3.57% 0% 0% 0% 0%
INEQSCHO 66.67% 16.67% 33.33% 7.14% 0% 0% 0% 0%
EQWK 0% 0% 50% 3.57% 50% 8.33% 0% 0%
INEQWK 15.14% 16.67% 28.57% 7.14% 14.29% 8.33% 0% 0%
EQSOC 25% 8.33% 50% 14.29% 25% 16.67% 0% 0%
INEQSOC 30.77% 16.67% 46.15% 21.43% 15.38% 16.67% 7.69% 50%
EQGVT 0% 0% 100% 3.57% 0% 0% 0% 0%
INEQGVT 25% 4.17% 25% 3.57% 50% 16.67% 0% 0%

Across almost all age groups and all the sites considered (family, society , government,..) experiences of inequality outnumbered experiences of equality (the only exception being those 41-55 years old who reported equal proportion of inequality and equality experiences in their relations with the government). It is also interesting to note that the family is the most often site of inequality for most of the respondents, a finding that runs counter traditional ideas of families as “heavens” of protection and well-being for their members, as the following excerpt illustrates:

Even if I were to take any decisions, neither my son nor his wife take any notice of it nor do they give any value to it. If they feel like, they listen but they refuse to listen to me sometimes. I don’t think they give my words any value at all.

Following the family, unequal treatment in society is also a frequent experience for a large number of persons with disabilities interviewed for this study, as the next quotes express:

People do look down upon me, they ridicule and humiliate me because I cannot walk and have to crawl on my arms. They think less of me because I cannot do the kind of work that they can, in fact I cannot do anything for myself. This is also something I feel miserable about.

(b) Equality-Inequality by Disability
Interviewees’ experiences of equality – inequality by disability
Experience Mobility Disability Sensory Disability
R% C% R% C%
EQFAM 90% 16.07% 10% 10%
INEQFAM 84.62% 19.64% 15.38% 20%
EQSCHO 50% 1.79% 50% 10%
INEQSCHO 83.33% 8.93% 16.67% 10%
EQWK 100% 3.57% 0% 0%
INEQWK 71.43% 8.93% 28.57% 20%
EQSOC 100% 14.29% 0% 0%
INEQSOC 84.62% 19.64% 15.38% 20%
EQGVT 0% 0% 100% 10%
INEQGVT 100% 7.14% 0% 0%

Persons with mobility impairments reported experiencing less equality in family as well as in society/community in equal percentages. The Interviewees with sensorial impairments on the other hand reported incidences of inequality in family, at work and in society. One interesting fact to be noticed is that persons with mobility impairments also reported experiences of equality in family and society, although the percentages of the latter two is much lesser than that found for experiences of inequality

(c) Equality-Inequality by Level of Education
Interviewees’ experiences of equality – inequality by education
Experience School Undergraduation Graduation or Higher Uneducated
R% C% R% C% R% C% R% C%
EQFAM 50% 17.86% 10% 11.11% 10% 11.11% 30% 15%
INEQFAM 15.38% 7.14% 23.08% 33.33% 7.69% 11.11% 53.85% 35%
EQSCHO 50% 3.57% 0% 0% 50% 11.11% 0% 0%
INEQSCHO 66.67% 14.29% 33.33% 22.22% 0% 0% 0% 0%
EQWK 0% 0% 50% 11.11% 0% 0% 50% 5%
INEQWK 57.14% 14.29% 0% 0% 28.57% 22.22% 14.29% 5%
EQSOC 62.5% 17.86% 0% 0% 0% 0% 37.5% 15%
INEQSOC 46.15% 21.43% 7.69% 11.11% 23.08% 33.33% 23.08% 15%
EQGVT 0% 0% 0% 0% 100% 11.11% 0% 0%
INEQGVT 25% 3.57% 25% 11.11% 0% 0% 50% 10%

As the table shows, the least educated one is, the more likely it will be for that person to experience inequality in the context of the family. Conversely, those with more years of education (graduation and more) are more prone to report inequality in the context of their relationship in society at large and work.

(d) Equality-Inequality by Region
Interviewees’ experiences of equality – inequality by region
Experience Urban Region Semi-urban Region Rural Region
R% C% R% C% R% C%
EQFAM 10% 20% 0% 0% 90% 17.65%
INEQFAM 0% 0% 0% 0% 100% 25.49%
EQSCHO 0% 0% 0% 0% 100% 3.92%
INEQSCHO 0% 0% 33.33% 20% 66.67% 7.84%
EQWK 0% 0% 0% 0% 100% 3.92%
INEQWK 14.29% 20% 28.57% 20% 57.14% 7.84%
EQSOC 0% 0% 12.5% 10% 87.5% 13.73%
INEQSOC 23.08% 60% 30.77% 40% 46.15% 11.76%
EQGVT 0% 0% 0% 0% 100% 1.96%
INEQGVT 0% 0% 25% 10% 75% 5.88%

Column percentages were taken into account for analyzing this table, as the difference in number between the three regions is too varied. But what does emerge is that Interviewees from the Semi-Urban and Urban regions say they experienced inequality the most in society, followed by at their respective workplaces. When it comes to the Rural region, the Interviewees report incidents of greatest inequality at their homes, in family. At the same time, persons with disabilities from both Rural and Urban regions have also said that family was an arena where they were treated more as equals, though the percentage of these persons is very small.

One woman from the Rural area said,

Well, there is this boy from the neighboring village who declared his love for me … but my parents do not like the boy and so do not agree to our marriage…it makes me feel ever so depressed that our love did not work out but I do not speak about any of this with my parents, I suffer alone, within myself.

And a middle aged man from the Rural region expressed,

There are some of my relatives in this village also, if they come to visit, they make it a point to come and meet me and speak with me.

(e) Equality-Inequality by Sex
Interviewees’ experiences of equality – inequality by sex
Experience Male Female
R% C% R% C%
EQFAM 80% 19.51% 20% 8%
INEQFAM 46.15% 14.63% 53.85% 28%
EQSCHO 50% 2.44% 50% 4%
INEQSCHO 33.33% 4.88% 66.67% 16%
EQWK 100% 4.88% 0% 0%
INEQWK 42.86% 7.32% 57.14% 16%
EQSOC 87.5% 17.07% 12.5% 4%
INEQSOC 69.23% 21.95% 30.77% 16%
EQGVT 0% 0% 100% 4%
INEQGVT 75% 7.32% 25% 4%

Gender appears to have an effect on experiences of inequality/equality reported by respondents. Men with disabilities have expressed that they faced experiences of Inequality the most in society. But when it comes to the women with disabilities, it is the family members who treat them in the most unequal terms. Another interesting point is that the percentages where women with disabilities have said that they found equality in any sphere is only in single digits, whereas men with disabilities have reported being treated with equality in family (more than inequality, in fact) and society. One woman for example shared the following:

My husband would in fact come home during the evenings and beat me up black and blue saying, I do not have any use for you anymore, you are a cripple, get out of my house and go back to where you came from, to your mother, and he would kick me all over saying this.

Another woman reported the problems she had to face with eating properly like this,

I have stopped eating thrice a day and eat only one meal in a day, because I do not feel like eating what with my in-laws always shouting and yelling at me for some small thing or the other.

(f) Equality-Inequality by Housing
Interviewees’ experiences of equality – inequality by type of housing
Experience Thatched Roof Housing Tiled Roof Housing Concrete Roof Housing Rented Housing
R% C% R% C% R% C% R% C%
EQFAM 60% 20.69% 40% 18.18% 0% 0% 0% 0%
INEQFAM 46.15% 20.69% 48.15% 27.27% 0% 0% 7.69% 10%
EQSCHO 0% 0% 100% 9.09% 0% 0% 0% 0%
INEQSCHO 16.67% 3.45% 50% 13.64% 33.33% 40% 0% 0%
EQWK 50% 3.45% 50% 4.55% 0% 0% 0% 0%
INEQWK 14.29% 3.45% 42.86% 13.64% 0% 0% 42.86% 30%
EQSOC 75% 20.69% 12.5% 4.55% 0% 0% 12.5% 10%
INEQSOC 38.46% 17.24% 7.69% 4.55% 23.08% 60% 30.77% 40%
EQGVT 0% 0% 100% 4.55% 0% 0% 0% 0%
INEQGVT 75% 10.34% 0% 0% 0% 0% 25% 10%

Persons with Disabilities interviewed living in thatched and tiled roof houses, mostly found in Rural areas, said they faced inequality the most in family and society, though the persons living in thatched roof houses reported equality and inequality in equal percentages. Interviewees living in concrete roofed own houses expressed that they faced inequality in society and at school and persons living in rented houses said they were treated unequally in both society and at work.

Dignity – Positive and Negative

Persons with Disabilities may have reported experiencing situations of both positive and negative dignity due to their greater association with their family and society they live in and much lesser association with school, workplace or government offices, as can be seen in the following tables.

(a) Positive and Negative Dignity by Age
Interviewees’ experiences of positive and negative dignity by age
Experience Aged 18 to 25 Aged 26 to 40 Aged 41 to 55 Aged 56 to 70
R% C% R% C% R% C% R% C%
POSDIGFAM 29.41% 17.65% 47.06% 22.43% 13.73% 29.17% 9.8% 38.46%
NEGDIGFAM 33.33% 18.82% 47.92% 21.5% 10.42% 20.83% 8.33% 30.77%
POSDIGCHO 60% 3.53% 40% 1.87% 0% 0% 0% 0%
NEGDIGSCHO 85.71% 7.06% 14.29% 0.93% 0% 0% 0% 0%
POSDIGWK 50% 2.35% 50% 1.87% 0% 0% 0% 0%
NEGDIGWK 50% 4.71% 50% 3.74% 0% 0% 0% 0%
POSDIGSOC 29.17% 8.24% 45.83% 10.28% 20.83% 20.83% 4.17% 7.69
NEGDIGSOC 40.58% 32.94% 44.93% 28.97% 10.14% 29.17% 4.35% 23.08%
POSDIGGVT 33.33% 1.18% 66.67% 1.87% 0% 0% 0% 0%
NEGDIGGVT 30% 3.53% 70% 6.54% 0% 0% 0% 0%

Persons with disabilities aged 18 to 55 years old have all expressed that the most humiliation they face due to their disability is from society. What should also be taken into consideration is that the number of Interviewees in the 18 to 25 years old group reported experiences of dignity or the lack of it from their family members in very similar numbers. As this young woman from a Minority community expressed,

I stopped going out because people would say, look at these people, they are still carrying a grown up in their arms, and others would stare at me, that is why I decided to remain at home.

Or as another woman with disability who has crossed her middle age mentioned,

We are not even given the minimum respect and what is worse, the others do not even have a good opinion of us, they think all disabled are uniformly bad people.

One person in his early 30s expressed how his wife treated him with respect and dignity, in the face of strong opposition from both her family and the community around because he had a disability, this way,

To date we have not had to face any problems at all, as our love has sustained us through the last 5 years and both of us know and understand each other very well. My wife has never faced a problem because I am disabled or due to my disability.

Speaking about the kind of support he got from the others in his community a 50-year old man said,

I really think if the people in the village were not there to support me, I would have been dead a long time ago because every time there is a harvest of some cereal or the other from their fields, they never forget to give me some part of their grain.

(b) Positive and Negative Dignity by Disability
Interviewees’ experiences of positive and negative dignity by disability
Experience Mobility Disability Sensory Disability
R% C% R% C%
POSDIGFAM 78.43% 22.22% 21.57% 22.45%
NEGDIGFAM 85.42% 22.78% 14.58% 14.29%
POSDIGCHO 80% 2.22% 20% 2.04%
NEGDIGSCHO 85.71% 3.33% 14.29% 2.04%
POSDIGWK 50% 1.11% 50% 4.08%
NEGDIGWK 75% 3.33% 25% 4.08%
POSDIGSOC 79.17% 10.56% 20.83% 10.2%
NEGDIGSOC 75.36% 28.89% 29.64% 34.69%
POSDIGGVT 66.67% 1.11% 33.33% 2.04%
NEGDIGGVT 80% 4.44% 20% 4.08%

In high percentages, persons with both sensory as well as mobility impairments have reported that they are not at all treated with dignity in society. Persons with sensory impairments have expressed though, that their dignity is respected and valued in their own family. When it comes to persons with mobility impairments interviewed and their relationships within the family, the percentage of persons reporting a sense of dignity and those who report the lack of it is almost similar, with the latter showing a slightly higher percentage.

One person with speech and hearing impairment reported, he was treated with great disrespect by the others in society, in several ways and forms:

It is not in once place, it is everywhere, the exclusion and humiliation because I am disabled, I am speech and hearing impaired … I can see it in their expressions when they see me, the way the others see me itself shows.

And,

No one cares or bothers about me, they all get away from me saying we have to keep moving our hands this way and that to speak with him, it is so irritating and boring.

Another interviewee who was speech and hearing impaired as well said

We would feel so depressed looking at those people laughing at us and think it is because we do not know how to speak like them that they are mocking at us like this and that is why we are having to face all these problems.

A woman who was visually challenged told of how people did not scruple to react to her disability right on her face:

When the others see me in the train, some of them comment, oh, the poor thing, she cannot see at all, she does not have the use of both the eyes but when I hear a comment like that I feel really bad. But I also feel, it is really not fair on their part to show up a lack in me like that, so overtly.

One person who was 57 years old has reported that he was able to get as much dignity in the society from others as much as he got from his family members thus:

I have found encouragement and support from both my family members as well as the community right from my childhood. I never had to face problems like someone telling me as I do not have the use of my legs, I should not go to school or study.

(c) Positive and Negative Dignity by Level of Education
Interviewees’ experiences of positive and negative dignity by education
Experience School Undergraduation Graduation or Higher Uneducated
R% C% R% C% R% C% R% C%
POSDIGFAM 33.33% 18.48% 9.8% 23.81% 25.49% 26.53% 31.37% 23.88%
NEGDIGFAM 43.75% 22.83% 6.25% 14.29% 10.42% 10.2% 39.58% 28.36%
POSDIGCHO 60% 3.26% 20% 4.76% 20% 2.04% 0% 0%
NEGDIGSCHO 42.86% 3.26% 42.86% 14.29% 14.29% 2.04% 0% 0%
POSDIGWK 25% 1.09% 0% 0% 50% 4.08% 25% 1.49%
NEGDIGWK 37.5% 3.26% 0% 0% 50% 8.16% 12.5% 1.49%
POSDIGSOC 29.17% 7.61% 8.33% 9.52% 25% 12.24% 37.5% 13.43%
NEGDIGSOC 46.38% 34.78% 7.25% 23.81% 15.94% 22.45% 30.43% 31.44%
POSDIGGVT 0% 0% 33.33% 4.76% 66.67% 4.08% 0% 0%
NEGDIGGVT 50% 5.43% 10% 4.76% 40% 8.16% 0% 0%

As reported in the interviews, for persons with disabilities who have completed schooling and those who are uneducated, society was the main source of injury and violation of their dignity. At the same time both the Undergraduates and Graduates with disabilities interviewed expressed that their dignity was protected and valued by their family members. The point to note here is that though some of the Interviewees also expressed that they got recognition and dignity in their family, the percentage is much less than for the lack in the same as well as in society.

One Interviewee from the Rural area, who was 19 years old and had just completed his 10th Class, or Schooling, and did not have the use of both his arms reported how his dignity was hurt by the others in the community he lived in:

The people in my village say, why was this boy born, it would have been better if he were dead, he does not have the use of both his arms, he is of no use for anything, he was born unnecessarily, he is such a big burden on his parents, wonder what sin this cripple has committed in which birth of his that he was born like this, these are only some of the things they say.

(d) Positive and Negative Dignity by Region
Interviewees’ experiences of positive and negative dignity by region
Experience Urban Region Semi-urban Region Rural Region
R% C% R% C% R% C%
POSDIGFAM 21.57% 18.97% 15.69% 16.67% 62.75% 26.02%
NEGDIGFAM 16.67% 13.79% 22.92% 22.92% 60.42% 23.58%
POSDIGCHO 20% 1.72% 40% 4.17% 40% 1.63
NEGDIGSCHO 14.29% 1.72% 14.29% 2.08% 71.43% 4.07%
POSDIGWK 25% 1.72% 25% 2.08% 50% 1.63%
NEGDIGWK 50% 6.9% 25% 4.17% 25% 1.63%
POSDIGSOC 37.5% 15.52% 4.17% 2.08% 58.33% 11.38%
NEGDIGSOC 30.43% 36.21% 24.64% 35.42% 44.93% 25.2Z%
POSDIGGVT 0% 0% 33.33% 2.08% 66.67% 1.63%
NEGDIGGVT 20% 3.45% 40% 8.33% 40% 3.25%

Persons with disabilities from all the three regions have reported facing indignity in society very often. Persons with disabilities living both in Rural and Urban areas have stated that they are treated well and given dignity in their own family more often than not, while for all groups their relationships with the government and other public authorities, although not very frequent, are in most cases associated with erosion of a sense of personal dignity.

One Interviewee who was 25 years old and was a short person living in the Rural area shared how he had to face insults from the others in his community thus:

The people in the village keep teasing and taunting me, they call me shorty, say that I am not useful for anything, that I will not be useful for my wife also.

(e) Positive and Negative Dignity by Sex
Interviewees’ experiences of positive and negative dignity by sex
Experience Male Female
R% C% R% C%
POSDIGFAM 52.94% 21.6% 47.6% 23.08%
NEGDIGFAM 41.67% 16% 58.33% 26.92%
POSDIGCHO 100% 4% 0% 0%
NEGDIGSCHO 57.14% 3.2% 42.86% 2.88%
POSDIGWK 50% 1.6% 50% 1.92%
NEGDIGWK 87.5% 5.6% 12.5% 0.96%
POSDIGSOC 66.67% 12.8% 33.33% 7.69%
NEGDIGSOC 56.52% 31.2% 43.48% 28.85%
POSDIGGVT 33.33% 0.8% 66.67% 1.92%
NEGDIGGVT 40% 3.2% 60% 5.77%

Men and women with disabilities both have reported lack of dignity in society. When it comes to family, the difference can be easily seen – whereas women with disabilities have reported lack of dignity and value from their family members (though a slightly lesser number have also said that they are given recognition and value in their family) men with disabilities have reported being given value and recognition by their families.

A 23 year old woman with disabilities from the rural area said that

The people in my village look at me very strangely, as if I were some freak, and say look at this cripple, who will marry her, she does not know to do any work.

Another woman in her 30s from the rural area talked about the kind of insults she had to bear from her husband because she had a disability thus:

If I were to say something to my husband he says horrible things like I will fuck your father, I will fuck your mother, for which I respond, you first fuck me, then you can fuck any number of dead people for which the response from him is to come with his wife and beat me up ever so badly.

(f) Positive and Negative Dignity by Type of Housing
Interviewees’ experiences of positive and negative dignity by type of housing
Experience Thatched Roof Housing Tiled Roof Housing Concrete Roof Housing Rented Housing
R% C% R% C% R% C% R% C%
POSDIGFAM 27.45% 25.93% 39.22% 25.32% 15.69% 29.63% 17.65% 13.04%
NEGDIGFAM 25% 22.22% 37.5% 22.78% 4.17% 7.41% 33.33% 23.19%
POSDIGCHO 0% 0% 60% 3.8% 40% 7.41% 0% 0%
NEGDIGSCHO 0% 0% 71.43% 6.33% 14.29% 3.7% 14.29% 1.45%
POSDIGWK 0% 0% 50% 2.53% 25% 3.7% 25% 1.45%
NEGDIGWK 1.25% 1.85% 25% 2.53% 12.5% 3.7% 50% 5.8%
POSDIGSOC 41.67% 18.52% 29.17% 8.86% 12.5% 11.11% 16.67% 5.8%
NEGDIGSOC 21.74% 27.78% 26.09% 22.78% 10.14% 25.93% 42.03% 42.03%
POSDIGGVT 0% 0% 66.67% 2.53% 0% 0% 33.33% 1.45%
NEGDIGGVT 20% 3.7% 20% 2.53% 20% 7.41% 40% 5.8%

Persons with disabilities from all the 4 groups have reported that they faced disrespect and insults from society. At the same time, except for persons living in rented houses (who report more percentage of lack of dignity than respect from their family members), persons with disabilities from the other 3 groups have reported that their dignity has not been violated within their families.

A 29 year old man living in the urban area in a rented house expressed the humiliation he has to face thus:

I also think, as people like me have to crawl quite near to the ground, they must think we are like dogs or something.

Another woman with disabilities in her 50s living in the urban area but in a rented house expressed her humiliation thus:

I really do not mind calling a physically disabled person as a cripple or a visual impaired person as blind but it does not just stop with name calling but there is a certain sarcasm in the way they say it, they make fun, look down upon, that is what I have a problem with, to keep me away, exclude me from society because I am disabled, that is what I have a problem with.

At the same time a 36 year old man from the rural area living in a thatched roof house expressed the following:

I and my wife get along very well and are happy together. I fell in love with her and got married to her, she belongs to a different caste than mine and of course her village is also a different one but we live together very happily.

Inclusion – Exclusion

(a) Inclusion-Exclusion by Age
Interviewees’ experiences of inclusion – exclusion by age
Experience Aged 18 to 25 Aged 26 to 40 Aged 41 to 55 Aged 56 to 70
R% C% R% C% R% C% R% C%
INCPHYS 0% 0% 50% 1.2% 0% 0% 50% 10%
EXCPHYS 40% 22.64% 46.67% 16.87% 10% 17.65% 3.33% 10%
INCCOM 25% 13.21% 57.14% 19.28% 7.14% 11.76% 10.71% 30%
EXCCOM 26.67% 22.64% 57.78% 31.33% 11.11% 29.41% 4.44% 20%
INCEDU 50% 9.43% 50% 6.02% 0% 0% 0% 0%
EXCEDU 57.14% 15.09% 28.57% 4.82% 7.14% 5.88% 7.14% 10%
INCWK 0% 0% 100% 1.2% 0% 0% 0% 0%
EXCWK 42.86% 11.32% 50% 8.43% 7.14% 5.88% 0% 0%
INCGVT 14.29% 1.89% 42.86% 3.61% 28.57% 11.76% 14.29% 10%
EXCGVT 22.22% 3.77% 55.56% 6.02% 22.22% 11.76% 0% 0%
INCRELIG 0% 0% 50% 1.2% 50% 5.88% 0% 0%
EXCRELIG 0% 0% 0% 0% 0% 0% 100% 10%

Except for persons belonging to the 56 to 70 years age group all three other groups have reported that they were being segregated from communicating with the others, much more than being included, because they had a disability. In general, experiences of exclusion outnumbered those of inclusion across all areas considered and all the age groups, albeit with different distribution for each of them: exclusion in the context of education is more important among those aged 18-25, exclusion in the workplace is reported more often by those 18-40 years old, and exclusion in rapports with the government was more frequently described by those 41-55 years old.

One person with disability who is 23 years old and from the semi-urban area and has completed his 10th class studies reported

You cannot play with us, you cannot work with us, that is what the ‘normal, good’ people think so they do not make friends with people like me.

Another 31 year old woman with disabilities who has completed her post-graduation also expressed her inability to communicate with others due to which she felt she was being excluded mainly due to her disability,

I have already come to realize that my opinions do not carry any sort of value in society through my experiences.

(b) Inclusion-Exclusion by Disability
Interviewees’ experiences of inclusion – exclusion by disability
Experience Mobility Disability Sensory Disability
R% C% R% C%
INCPHYS 0% 0% 100% 4.55%
EXCPHYS 76.67% 19.33% 23.33% 15.91%
INCCOM 78.57% 18.49% 21.43% 13.64%
EXCCOM 71.11% 26.89% 28.89% 29.55%
INCEDU 70% 5.88% 30% 6.82%
EXCEDU 78.57% 9.24% 21.43% 6.82%
INCWK 100% 0.84% 0% 0%
EXCWK 64.29% 7.56% 35.71% 11.36%
INCGVT 71.43% 4.2% 28.57% 4.55%
EXCGVT 77.78% 5.88% 22.22% 4.55%
INCRELIG 50% 0.84% 50% 2.27%
EXCRELIG 100% 0.84% 0% 0%

Persons with mobility and sensory impairments both reported lesser access to communication as well as physical environment. Here it must be noticed that the difference in percentages of inclusion and exclusion in communication was found to be somehow greater for persons with sensory impairments than for persons with mobility disabilities. It is also interesting to note that no report of inclusion in the physical environment was found among people with physical impairments, thus denoting the importance that lack of accessibility has in shaping experiences of exclusion for those with physical impairments in India.

A young man,. 23 years old, from the urban area who has completed his graduation and who is speech and hearing impaired explained his problems in communicating with others as follows:

We have to face this kind of problem at every turn of our life, every day, everywhere, be it in the offices, in the shops, in the very school we are studying, if we were to study in a ‘normal’ school … this is a common problem for all of us who are speech and hearing impaired. I have to suffer through this all through my life, I know.

A 32 year old woman who moves with the support of crutches living in the semi-rrban area explained the kind of problems she has to face in moving about, the inaccessible physical environment thus,

Other than this, some of the other problems that I have to face is my mobility, I cannot get into the auto rickshaw very easily or into any other public transport vehicle. That is why, I tend to avoid traveling outside as much as possible and only go out when it is absolutely necessary.

(c) Inclusion-Exclusion by Level of Education
Interviewees’ experiences of inclusion – exclusion by education
Experience School Undergraduation Graduation or Higher Uneducated
R% C% R% C% R% C% R% C%
INCPHYS 50% 1.54% 50% 7.69% 0% 0% 0% 0%
EXCPHYS 40% 18.46% 3.33% 7.69% 3.67% 22% 20% 17.14%
INCCOM 39.29% 16.92% 3.57% 7.69% 17.86% 10% 39.29% 31.43%
EXCCOM 48.89% 33.85% 6.67% 23.08% 22.22% 20% 22.22% 28.57%
INCEDU 40% 6.15% 20% 15.38% 40% 8% 0% 0%
EXCEDU 28.57% 6.15% 28.57% 30.77% 35.71% 10% 7.14% 2.86%
INCWK 100% 1.54% 0% 0% 0% 0% 0% 0%
EXCWK 3.71% 7.69% 0% 0% 57.14% 16% 7.14% 2.86%
INCGVT 42.86% 4.62% 0% 0% 28.57% 4% 28.57% 5.79%
EXCGVT 11.11% 1.54% 11.11% 7.69% 44.44% 8% 33.33% 8.57%
INCRELIG 50% 1.54% 0% 0% 0% 0% 50% 2.86%
EXCRELIG 0% 0% 0% 0% 100% 2% 0% 0%

All groups and particularly that of Persons with Disabilities who have studied below 10th Class at school or lower have reported experiencing exclusion in communication. Interviewees who only completed their Under-graduation have reported the highest percentage of exclusion at their educational institutions and Graduates with disabilities have said that it was in the physical environment that they faced the greatest barriers.

One Interviewee who is 18 years old, from a rural area and who had completed his education till the 5th Class expressed his problems in communicating his problems and views as follows:

I do not think non-disabled persons have this problem, they can meet and speak with any other person that they wanted to. No one excludes them or keeps them away from society like they do me.

A 25 year old woman from a rural area, who had completed her 12th Standard of education expressed the problems she had to face during her education both inside the classroom and outside thus:

I used to feel depressed that it was because I have this lack that they are calling me like this. Also I stand or sit far away when the other children at school are playing games and sports.

A 24 year old person with disability living in the urban area and having completed Bachelor’s Degree in Engineering spoke about his problems in physical environment the following way:

As it is traveling by bus is really difficult as some buses stop at the bus stop but most often the bus drivers do not stop the bus at the stop and so we have to run to catch the bus. Once when I was running like that, I slipped and fell and came under the tires of the bus and I would have been crushed to death except for the presence of mind of the driver who stepped on the breaks real hard.

(d) Inclusion-Exclusion by Region
Interviewees’ experiences of inclusion – exclusion by region
Experience Urban Region Semi-urban Region Rural Region
R% C% R% C% R% C%
INCPHYS 50% 2.5% 50% 1.89% 0% 0%
EXCPHYS 33.33% 25% 40% 22.64% 26.67% 11.43%
INCCOM 25% 17.5% 14.29% 7.55% 60.71% 24.29%
EXCCOM 17.78% 20% 35.56% 30.19% 46.67% 30%
INCEDU 10% 2.5% 40% 7.55% 50% 7.14%
EXCEDU 28.57% 10% 28.57% 7.55% 42.86% 8.57%
INCWK 0% 0% 0% 0% 100% 1.43%
EXCWK 28.57% 10% 64.29% 16.98% 7.14% 1.43%
INCGVT 0% 0% 28.57% 3.77% 71.43% 7.14%
EXCGVT 33.33% 7.5% 11.11% 1.89% 55.56% 7.14%
INCRELIG 50% 2.5% 0% 0% 50% 1.43%
EXCRELIG 100% 2.5% 0% 0% 0% 0%

Persons living in the urban areas reported that they faced barriers in environment the most and then in communication whereas for Interviewees living in Semi-urban region, it was the other way around, in that, they found communicating with others in society due to their disability a greater barrier than the physical environment they lived in. As far as the persons with disabilities living in rural areas were concerned, they reported inability to communicate with others due to their disability as being the most exclusionary.

A 29 year old man from the rrban area told of the problems he had to face every day when he went out on some work or the other thus:

Generally, when I travel by the public transport bus, if the driver allowed me into the bus, the conductor of the bus would not, and if the conductor agreed to let me in, then the driver would refuse entry. This kind of treatment for us because we are disabled, that is all. When I ask those people strongly why I should not be let into the bus, they demand very rudely, is this bus your father’s that we should let you in?

A speech and hearing impaired person from the Semi-urban area who is 25 years old expressed the problems in communication he had with others in society:

The people around me only insult and humiliate me. This cripple is a bad person, they say because I have this disability.

A 40 year old woman with disability from rural area expressed her anguish in not being able to communicate and being excluded thus:

Even my own family members treat me as something less than human so it is not surprising that the others in the village look at me strangely and laugh at me and call me all sorts of names all of which makes me feel humiliated and hurt.

(e) Inclusion-Exclusion by Sex
Interviewees’ experiences of inclusion – exclusion by sex
Experience Male Female
R% C% R% C%
INCPHYS 50% 1.04% 50% 1.49%
EXCPHYS 50% 15.63% 50% 22.39%
INCCOM 46.43% 13.54% 53.57% 22.39%
EXCCOM 62.22% 29.17% 37.78% 25.37%
INCEDU 70% 7.29% 30% 4.48%
EXCEDU 71.43% 10.42% 28.57% 5.97%
INCWK 0% 0% 100% 1.49%
EXCWK 71.43% 10.42% 28.57% 5.97%
INCGVT 85.71% 6.25% 14.29% 1.49%
EXCGVT 55.56% 5.21% 44.44% 5.97%
INCRELIG 50% 1.04% 50% 1.49%
EXCRELIG 0% 0% 100% 1.49%

Both women and men with disabilities report exclusion in communication and physical environment as the most important forms of exclusion experienced.

One woman with disabilities expressed the problems she faced in both communicating her problems as well as the excluding physical environment around her house and community thus:

No, I did not get any support because I cannot walk, so everyone thinks where she has to go anyway. That is why I remain inside the four walls of my house, confined both physically and mentally.

A 22 year-old man with disabilities from the Semi-urban area reported the inaccessibility and exclusion he had to face as a matter of fact thus:

If I had to go to the hostel from the college, I had to walk on the soil for some distance and that was the problem, and even if I were to make use of the tricycle, because of the mush that was formed due to the constant rains, the wheels of my tricycle would get stuck and I would not be able to move forward at all.

(f) Inclusion-Exclusion by Type of Housing
Interviewees’ experiences of inclusion – exclusion by type of housing
Experience Thatched Roof Housing Tiled Roof Housing Concrete Roof Housing Rented Housing
R% C% R% C% R% C% R% C%
INCPHYS 0% 0% 0% 0% 50% 3.85% 50% 1.59%
EXCPHYS 23.33% 18.92% 10% 8.11% 23.33% 26.92% 43.33% 20.63%
INCCOM 32.14% 24.32% 28.57% 21.62% 3.57% 3.85% 35.71% 15.87%
EXCCOM 20% 24.32% 46.67% 32.43% 13.33% 23.08% 40% 28.57%
INCEDU 10% 2.7% 60% 16.22% 10% 3.85% 20% 3.17%
EXCEDU 14.29% 5.41% 28.57% 10.81% 21.43% 11.54% 35.71% 7.94%
INCWK 100% 2.7% 0% 0% 0% 0% 0% 0%
EXCWK 0% 0% 7.14% 2.7% 21.43% 11.54% 71.43% 15.87%
INCGVT 42.86% 8.11% 14.29% 2.7% 28.57% 7.69% 14.29% 15.9%
EXCGVT 44.44% 10.81% 22.22% 5.41% 22.22% 7.69% 11.11% 1.59%
INCRELIG 50% 2.7% 0% 0% 0% 0% 50% 1.59%
EXCRELIG 0% 0% 0% 0% 0% 0% 100% 1.59%

Persons with disabilities in all four groups of housing considered have reported maximum exclusion in communication. Persons with disabilities living in concrete roofed houses and rented houses, to be found mostly in the Semi-urban and urban regions, said that they also faced barriers in their physical environment. Interestingly, persons with disabilities living in thatched roof and tiled roof houses reported similar proportion of inclusion in communication as exclusion.

One woman with disabilities who was 30 years old and living in concrete roofed house in Semi-urban area expressed how many problems she had to face to get access to even the basic needs,

There was no sand at all near the entrance to the office and it was completely covered with stones and pebbles but as there was no other choice I had to walk on my arms through the stones, though it hurt me quite badly. That is why it hurt me all that much more when the work that I gone to that office for was such a failure.

A middle aged woman with disabilities living in a tiled roof house in the rural area told of the levels to which she felt excluded in communicating her needs or moving around in her community thus:

They look at me as if they have nothing to say to me anymore now that I have become like this…I am being denied and am losing everything.

A 20 year old man with disabilities living in a thatched roof house in the rural area said that he had never faced too many problems in communicating with the others and felt that he was included within his community:

I would share my problems and pain with the people who live next to my house and they would listen to me sympathetically and whenever there was some event in the village, they would come and inform me compulsorily.

Respect for Difference

(a) Respect for Difference by Age
Interviewees’ experiences of respect for difference by age
Experience Aged 18 to 25 Aged 26 to 40 Aged 41 to 55 Aged 56 to 70
R% C% R% C% R% C% R% C%
BEING RESPECTED 25.81% 10.53% 41.94% 13.98% 22.58% 23.33% 9.68% 18.75%
BEING LABELLED 36.25% 38.16% 43.75% 37.63% 12.5% 33.33% 7.5% 37.5%
BEING DISRESPECTED 36.36% 36.84% 41.56% 34.41% 14.29% 36.67% 7.79% 37.5%
INCIDENCE 40.74% 14.47% 48.15% 13.98% 7.41% 6.67% 3.7% 6.25%

Persons with Disabilities from all four age groups reported that they were either labeled with their disability or were not respected because of their disabilities, and being labeled was the more predominant mode for others in society to isolate persons with disabilities exclusively because they had a disability, as the following excerpts illustrate:

Whereas, back in the town they would call me all kinds of names like hey you cripple, hey you blind bat, come here. They would insult me by giving a name to my disability and calling me with that, even though they knew my given name.

No matter how well my clothes might look, I still have to crawl in the soil and I myself become soiled, so we can never be equal, he who can walk and I. no one looks at or judges the person but the kind of clothes he or she is wearing, that is how society is. That is the reason why I feel insulted.

One of my friends for instance, got a job and he was actually tortured to find himself an assistant for himself, but all those who tortured him so refused to find him an assistant. As I said, each and every disabled person has to face some problem or the other constantly.

(b) Respect for Difference by Disability
Interviewees’ experiences of respect for difference by disability
Experience Mobility Disability Sensory Disability
R% C% R% C%
BEING RESPECTED 70.97% 13.58% 29.03% 16.98%
BEING LABELLED 77.5% 38.27% 22.5% 33.96%
BEING DISRESPECTED 75.32% 35.8% 24.68% 35.85%
INCIDENCE 74.07% 12.35% 25.93% 13.21%

Persons with both mobility and sensory impairments reported that they were labeled and shown complete disrespect by others is society because of their disability. A point to be noted here is that though the percentages for being disrespected are almost identical, when it comes to being labeled, it is the group of persons with mobility impairments who report greatest incidence of this form of human rights abuse.

One Interviewee who is 24 years old and is speech and hearing impaired shared the kind of disrespect that she has to face in society due to her disability thus:

They look down upon me, demean me, insult and make fun of me, joking about me behind my back, etc. as I cannot hear, people do all kinds of things and look at me and treat me strangely.

A 20 year old woman with Mobility disability from the uban area spoke of how she is labeled in society just because she had a disability.

Every person has something or he other to say to me when I go onto the roads and none of it is pleasant, they all call me hey you slut, you whore, where are you going, who is going to marry you, you bitch and even worse abuses. I have to endure all this when I go out and I keep thinking why did God have to create me like this.

(c) Respect for Difference by Education
Interviewees’ experiences of respect for difference by education
Experience School Undergraduation Graduation or Higher Uneducated
R% C% R% C% R% C% R% C%
BEING RESPECTED 32.26% 10.99% 12.9% 23.53% 19.35% 13.33% 35.48% 17.74%
BEING LABELLED 45% 39.56% 7.5% 35.29% 16.25% 28.89% 31.25% 40.32%
BEING DISRESPECTED 46.75% 39.56% 6.49% 29.41% 19.48% 33.33% 27.27% 33.87%
INCIDENCE 33.33% 9.89% 7.41% 11.76% 40.74% 24.44% 18.52% 8.06%

The percentage of persons with disabilities who completed their Schooling who reported being labeled or experiencing other forms of disrespect on the basis of their disability is identical. Interviewees who had completed their Under-Graduation however, reported being labeled for their disability more than being disrespected for the same, and persons who completed their Graduation said they had to face incidents of being shown disrespect by the others more than being labeled. When it comes to the uneducated persons with disabilities, their main concern was that of being labeled, the percentage being far more than being disrespected. In sum, the lesser the education the greater the likelihood that one would be labeled on the basis of a disability

An 18 year old woman with disability who had no formal education and who at the time of the interview was living in a rural area shared the kind of disrespect she has to face every day of her life thus:

They call me shorty, cripple, lame, I feel quite miserable and often cry my heart out listening to those words.

Another 22 year old man with disability who lived in the semi-urban area, had completed his 12th Class and was pursing his Graduation at the time of the interview, reported on how he gets labeled by the others in society with his disability most often, an example of which was as follows:

They said why does a man without the use of his legs needs to come to places like these or need to attend functions like these. They were able to say these things and hurt me so badly because they knew that I was not capable of getting back at them, because I was disabled.

(d) Respect for Difference by Region
Interviewees’ experiences of respect for difference by region
Experience Urban Region Semi-urban Region Rural Region
R% C% R% C% R% C%
BEING RESPECTED 29.03% 14.06% 6.45% 3.77% 64.52% 20.41%
BEING LABELLED 25% 31.25% 26.25% 39.62% 48.75% 39.8%
BEING DISRESPECTED 29.87% 35.94% 28.57% 41.51% 41.56% 32.65%
INCIDENCE 44.44% 18.75% 29.63% 15.09% 25.93% 7.14%

Persons with Disabilities living in urban and Semi-urban regions have reported being disrespected more than being labeled, though that was also a crucial violation. When it comes to the rural region on the other hand, it is being labeled for their disability which persons with disabilities report more than being disrespected, although there were incidents cited for this too.

A 24 year old man from the urban area shared about he was humiliated because he had a disability thus:

I approached them, the mother pulled her daughter away from me and told her that she must not come too close to me, that she would also be afflicted with the same problem. I felt horrible listening to her speak like that about me.

Another person from the Semi-urban area, a visually impaired 24 year old woman shared her experience in society,

People speak very cheaply and insultingly about me when I go out in society, especially men pass really hurting comments about me. Added to this, even my family members say all kinds of things and make fun of me.

A 25 year old man with disability from the rural region spoke about how he is forever called by his disability name and how much of a humiliating experience this is for him thus:

If I were to go out somewhere, they call out to me, hey you lame duck, come over here. I think, well, I am lame and a cripple so I guess they are not wrong to call me like that, so let them. But once there were a group of the villagers standing by and they called me like that and began laughing out loud and that is when I felt really bad… Earlier, they would all call me by my given name but now they call me a lame. Everyone calls me like that. First they add the word cripple to my given name and then they call me with both names. I feel quite miserable when they do this kind of name calling.

(e) Respect for Difference by Sex
Interviewees’ experiences of respect for difference by sex
Experience Male Female
R% C% R% C%
BEING RESPECTED 70.97% 17.46% 29.03% 10.11%
BEING LABELLED 55% 34.92% 45% 40.45%
BEING DISRESPECTED 59.74% 36.51% 40.26% 34.83%
INCIDENCE 51.85% 11.11% 48.15% 14.61%

As can be seen, both men and women with disabilities reported being respected less often than being labeled but whereas men with disabilities reported more frequently being disrespected, women with disabilities reported more incidents of being called their disability names.

For instance, a 46 year old man with disability from semi-urban area expressed his pain of encountering disrespect at every stage in his life,

Of course, they do make fun of me and call me all kinds of names, right from inside my home, to the auto rickshaw driver, at the bus stand, in the market, if I get into a bus or a train, wherever it might be, I would face the same kind of insults and humiliation.

One Interviewee who is a 20 year old woman with disability, who lives in the urban area and is uneducated shared the extent of abuse and humiliation that she as a woman with a disability has to endure when she went out into society:

Every person has something or the other to say to me when I go onto the roads and none of it is pleasant, they all call me hey you slut, you whore, where are you going, who is going to marry you, you bitch and even worse abuses. I have to endure all this when I go out and I keep thinking why did God have to create me like this.

(f) Respect for Difference by Housing
Interviewees’ experiences of respect for difference by type of housing
Experience Thatched Roof Housing Tiled Roof Housing Concrete Roof Housing Rented Housing
R% C% R% C% R% C% R% C%
BEING RESPECTED 38.71% 25.53% 32.26% 15.63% 12.9% 12.12% 16.13% 7.04%
BEING LABELLED 22.5% 38.3% 32.5% 40.63% 15% 36.36% 30% 33.8%
BEING DISRESPECTED 19.48% 31.91% 27.27% 32.81% 15.58% 36.36% 37.66% 40.85%
INCIDENCE 7.41% 4.26% 25.93% 10.94% 18.52% 15.15% 48.15% 18.31%

Persons with disabilities living in different kinds of houses all have reported being labeled and disrespected in society due to their disability. But when seen in detail, it becomes apparent that whereas persons with disabilities living in thatched and tiled roof houses said they faced more incidents of being labeled with their disability names than disrespected, persons living in concrete houses reported the same percentages for both. And when it comes to persons with disabilities living in rented houses, they reported more often being disrespected due to their disabilities than being labeled their disability names.

A 24 year old person with disability living in the semi-urban area in a small hutment spoke about the way people around labeled him with his disability and insulted him and his helplessness in stopping them from doing so thus:

They say you cannot walk or go anywhere you cripple, why do we even have to bother to speak with you, there are many ho speak like this with me. I feel very depressed when I hear words like this from them. I also feel what else can I do but listen to these people and bear with it. After all, I cannot speak the same kind of hurting words to them or stop them with physically.

Another person, a 40 year old woman with disabilities living in the rural area in a tiled roof house is resigned to her fate of bearing insults and humiliation for life and says,\

They all call me a cripple, be it young or old alike, all of them call me a cripple, but I think and feel, well I am a cripple and lame so I guess I must listen to them calling me the same.

Discussion of Findings Part 7: Recommendations for Interviewees

When asked about what they thought was needed to be done in order to overcome current situations of discrimination and human rights abuses experienced by people with disabilities, respondents advanced a number of recommendations as presented on table.

Interviewees’ recommendations
Recommendation Number of Interviewees Percentage of Interviewees
Economic Supports 31 27.67
Legislation 11 9.82
Peer Support 10 8.92
Raise Awareness 20 17.85
Representation 9 8.03
Respect 8 7.14
Social Supports 17 15.17

Economic Supports

31 Interviewees expressed the need for some form of financial support, especially from the Government, be it in the form of loans, technical and vocational training leading to employment, so that their lives would improve and they would be able to lead more respectful lives, with dignity. They also expressed apathy that though the government was capable, it was not taking any measures at all for looking after the welfare of the people with disabilities in the state, as the following statements show:

I have a strong belief that if the government were to come forward at this point and help me out in one way or the other and create greater opportunities on an equal basis regarding livelihoods, then I would also be able to live on equal terms with non-disabled persons. But this is something that the government is not doing and should most definitely do and take up. I think if there is no support from the government especially, then the chances of my living long is not possible and this is true of every disabled person in this society today.

I wish either the government or the others in society were to give me some form of a job, like maybe as a sweeper or watering plants and trees, cleaning the windows and glass doors, or something like that I would be always in the forefront to do such work and be able to live a better and dignified life.

Transport facilities should be made keeping in mind the needs of the disabled, good drinking water should be made accessible to each and every disabled, even health facilities should be available. Education should be free for all and meals should be provided for the families of disabled people and the poorest people.

Raise Awareness

20 Interviewees suggested that the levels of awareness regarding the problems and issues of the persons with disabilities should be raised, and that this sensitization process should begin with the immediate family members of the family of the person with a disability,

First of all there should be respect and recognition from the family of the disabled themselves. The first thing that needs to be eliminated is the disparagement and discrimination by the very family members of the disabled person. Their issues have to be identified and they should be given counseling both at the family and societal levels and thereby remove the discrimination meted out to the disabled people. The disabled should develop fighting skills, to fight for what is theirs. We have been pushed back in society for so long that this process would not be easy but would take a little more time to get recognition in society as equal members.

At the same time the role of the other civil society organizations also was stressed by the Interviewees in raising awareness regarding the issues of persons with disabilities,

But lot of people and agencies have to come together to ensure that this sensitization happens, agencies like the central and state governments, voluntary organizations, people, departments, and it should not be left as a sole responsibility for the disabled people to accomplish by themselves.

Interviewees with persons with Speech and Hearing impairments emphasized the need for the universal knowledge of sign language in the society:

Right from childhood itself, if sign language were to be taught to children by teachers as just another subject along with the others, it will become quite common. If the non-disabled were to encounter people like me, then it would become easy for them, as they have already studied the same as a subject, to converse with us easily.

And,

I think that each and every government officer in all the districts of the state should be taught to speak the sign language compulsorily because in case a person like me goes there for some work, even if it were to apply for a job, then they would be able to respond much more friendlily, would be able to understand our problems and help us in one way or the other. So it is my sincere request for whoever is concerned that at least the higher officials of every office in each district should be given training in speaking and understanding sign language.

Social Supports

All the interviewees stressed the role of the government in taking up appropriate measures for bringing awareness to people and sensitizing them and also emphasized that these measures should be stringently implemented, including dissemination of the all the schemes and entitlements for people with disabilities,

Though livelihood and access to employment is the most important thing for most f persons with disabilities in this study 17 Interviewees said that not just livelihood but other aspects of their lives was also important,

The Quota allocated for the disabled people should be availed by the disabled people first. It is not some one or two persons’ property to be distributed at their will to whom they like. Whatever scheme or Government Order might be released by the Government should be informed to all the disabled people immediately. It is the government responsibility to ensure that we also enjoy equal status in society. If we were kept informed, through the agency of the voluntary organizations, then we would also be able to enjoy those benefits. We would be able to come out of our miserable lives with that form of support, then we can show you how ready we are to struggle and work hard to better our lives and the society as well.

And that people with disabilities should be given access to proper food,

Instead of just the pension, government should ensure that all disabled get to eat at least two square meals in a day.

At the same time, that the proper health of the persons with disabilities should be ensured by the government,

I feel if the government were to take some measures to see that I become healthy again and am able to take up work it would be good. I think that at least as long as I live, I should be provided the proper medication for whatever this ailment of mine is, so that I could at least live a painless life, as long as I am alive.

Legislation

11 Interviewees discussed the importance of amendments to the present measures for ensuring the equal opportunities for persons with disabilities, or at least greater stringency in the implementation of the same, as can be seen from the below statements:

I am of the strong belief that the 3% Reservation that is being given to the disabled should be increased to a higher percent by the government.

Also, the government should ensure that private sector companies also employ disabled persons, if it brings out Rules that if a certain percentage of its employees are disabled then the company will receive some incentive or tax exemption or something similar.

I am of the strong opinion also that government officials should take stringent measures to ensure that people do not call the disabled people by their disability names, like cripple or lame, which is normally the case in the villages.

One Interviewee, in fact, stressed the fact that mere mouthing of words of support were not enough, but it must be seen in action,

An organization or group of disabled people should be formed and a leader should be elected for this group and they should work to ensure that the government brings out a Government Order to see to it that there is no violence on disabled or any form of humiliation and to see that such things do not occur for the disabled, both the officers and the people in general, the nearest family members of the disabled, like their siblings, are made aware so that the disabled also can find a definite place for themselves in society. It would really be good if some steps were taken like that because it has become a matter of fact that disabled must face humiliation and pain and live a life of misery and difficulties.

Peer Support

The number of Interviewees who expressed that they would be able to gain respect and dignity as well as equality in society through peer support (10), representation (9) and respect

(8) were 10 or less each. Speaking about peer support or the importance of forming into groups, to fight against the problems dogging them, the interviewees said,

We want to form into groups because I think we would be able to get lot of respect just like the women’s groups today are getting from society.

All the disabled people should form into a group and must be united in fighting against any injustice against them and only then do I think there will be change in society.

Representation

As far as Representation is concerned one of the Interviewees expressed the following way, which was what was shared by the others who stressed on Representation as well:

We should be able to put forward our problems in front of the Government, all over the state. It is of no use if an individual disabled person speaks about his or her problems. Any solution becomes possible only if there are many voices.

Respect

Regarding Respect, one of the Interviewees had to say, as did everyone else,

I think that not just disabled persons like me who is speech and hearing impaired but everyone should live well in society, should be able to respect each other. I think this way because after all, what runs through their veins is blood and in our veins also runs blood, we are all the same in that way.

And some others believe education was one of the crucial components for people with disabilities to gain respect from the others in society,

If we are educated well, we will gain respect from the society. Be it disabled or non-disabled, if he or she is not educated, then they are not valued or respected by the society. Also, if we are educated, then we would know what the society is and how to live in it with respect.

Conclusions Drawn

The following conclusions are important for understanding comprehensively the wide range of socio-cultural, legal and political implications that place a burden on the lives of persons with disabilities in the state of Andhra Pradesh.

  1. Persons with disabilities have few opportunities to enjoy decision making power and are discriminated against mostly by their own family members, followed by the community in which they live and the personnel in the government offices, where they go to access their much needed services. Lack of education and little access to law and their own citizenship rights still remain as challenges to people with disabilities in the state, in spite of 61 years of Indian Independence
  2. Negative attitudes of family members, society and government toward persons with disabilities remain entrenched hence the denial of human rights, particularly the denial of equal opportunities to persons with disabilities in the areas of education, employment, communication, marriage, transport, decision making, etc.
  3. In spite of the various poverty alleviation schemes conceived by both the Government of India and Government of Andhra Pradesh, the houses in which persons with disabilities live, particularly in semi-urban and urban regions, reflects a failure to recognize the link of persons with disabilities with poverty, hence the deplorable living conditions of persons with disabilities in low income groups
  4. Though the persons with disabilities live in rural, Semi-urban and urban regions, the question of their human dignity remains a challenge across the board. If the people in rural areas face more discrimination and inequality in their families and less autonomy, those who live urban areas experience the same but more with respect to society, government and their physical environment.
  5. Women with disabilities face multiple forms of discrimination, that of being women, having a disability, being poor, and belonging to lower caste hence their experience of even lower autonomy, less dignity and equality in their families as well as in society at large and in their treatment by government.
  6. Though the domestic legislation and signing and ratifying the UN Treaties, particularly the UN Convention on the Rights of Persons with Disabilities, which India has both signed and ratified, appears to have given hope for a positive change in the lives of persons with disabilities, the public agencies that are responsible for bringing in this change have been clearly unable or unwilling to tackle the responsibility of implementing these treaties.
  7. In spite of the lofty claims made by both the Government of India and Government of Andhra Pradesh on the inclusion of persons with disabilities, the reality remains that the very principles of development are yet to be inclusive in their design and operationalization both in terms of policy and implementation.
  8. Individual Human Rights Monitoring for persons with disabilities will forever remain a tool for bringing accountability to persons with disabilities toward society, and for the family, society and State toward persons with disabilities.

Appendix 1: Interview Guide

Interview Guide for the study called Monitoring the Human Rights of People with Disabilities in:

A. Beginning the Interview

Introductions:
  • [Introduce everyone present (monitors, field assistant, aide and anyone else attending the interview)]
  • [Record the interviewee’s name on the Coding Sheet.]
Request Written, Free and Informed Consent:
  • [Review the Information Sheet with the interviewee.]
  • [Ask the interviewee if she/he will consent to participate by signing the Free and Informed Consent Form.]
  • [If the interviewee signs the participation line on the Free and Informed Consent Form, proceed with interview.]
  • [If the interviewee refuses to sign the participation line on the Free and Informed Consent Form, thank the interviewee for his/her time and END the interview. Do not proceed any further.]
Request Written Permission to Record the Interview:
  • [Ask the interviewee if she/he will consent to having his/her interview recorded.]
  • [If consent to record is given, the interviewee must sign the applicable line on the Free and Informed Consent Form.]
  • [If consent to record the interview is not given, the interview can still proceed with someone taking notes.]
Note
If written consent to record given – begin recording now

B. Situations faced by the Interviewee:

  1. Please tell me a little about your life during the past five years. What things do you do? Where do you go? Who do you meet?
  2. What are the things in your life that are most satisfying?
  3. What are the most difficult barriers or challenges that you face in your life?
[1st Situation]

1.1 Do you recall a particular time or event in the last five years when you were left out or treated badly or prevented from participating because of your disability?

1.2 What happened? Where and how did it happen?

1.3 Is this still happening or did it just happen once?

1.4 Are there other details that you want to share with us about what happened, when and how in this situation?

[ Dignity ]

1.5 How did this situation make you feel and why? (For example, did you feel respected/not respected, ignored/cared for, worthy/unworthy?)

1.6 What made you feel that way?

1.7 Why do you think people treated you that way?

[ Autonomy ]

1.8 Did you feel that you had a choice about what happened to you? Why? or why not?

1.9 If you had a choice, would it have made a difference to what happened?

For situations where there are clear issues related to choice and making a decision yourself (Self-Determination) ask:
  1. Did you want to make a different decision or did you want to do something else? What was the different decision or what did you want to do?
  2. Did you have enough information to make that decision?If not, why not? What prevented you from having enough information?
  3. Did you feel pressured to act the way you did? Who/What was pressuring you? How did it make you feel?
[ Inclusion ]

1.10 Did people in your community who knew or saw what happened to you do anything about it?

If yes, who?

Monitor:
interviewee does not need to give someone’s name here – can give general description of the person e.g. “neighbour”, “sister”, etc.

What did they do?

For situations where there are clear issues related to Inclusion ask:
  1. Were you kept apart or left out in this situation?
  2. Did you need a service or some assistance so that you could participate?If yes, what service(s) or assistance did you need? Did you receive it?If you did not receive it, how did that affect you?
[ Non-Discrimination & Equality ]

1.11 How do you think your disability affected what happened to you?

1.12 Do you think that people without disabilities would be treated the same way you were?

Why or why not?

How would they have been treated?

For situations where there are clear issues of Discrimination and Inequality ask:
  1. Do you know anyone else who was treated in the way you were?
[ Respect for Difference ]

1.13 Were you treated the way you were because people thought you were different?

If yes, why?

1.14 Do you think that a person without a disability would have been treated in a similar way in this situation?

Why? or why not?

1.15 Do you feel that people label you and then treat you differently because of the label?

If yes, what label do they use? How does this label affect you?

For situations where there are clear issues related to Respect for Difference ask:
  1. Would someone of a different ethnicity be treated that way? Why? or why not?
  2. Would a woman be treated that way? Why? or why not?
  3. Would a poor person be treated that way? why? or why not?

1.16 Did you report the situation to anyone? Yes or no?

  • If you reported the situation, what kind of person/organization did you report it to?
    • government official
    • police officer
    • army officer
    • NGO employee
    • religious leader
    • cultural leader
    • ombudsperson
    • other (specify)
  • how did that person react?
  • what action was taken?
  • If you did not report the situation to anyone, why did you not report it?

1.17 In your opinion, what action[s] should be taken to improve [or prevent] the situation in the future?

1.18 Is there anything else that you would like to tell us about that situation?

Monitor:
Here you will move on to the 2nd situation…

2.1 Do you recall another particular time or event in the last five years when you were left out or treated badly or prevented from participating because of your disability?

2.2 What happened? Where and how did it happen?

2.3 Is this still happening or did it just happen once?

2.4 Are there other details that you want to share with us about what happened, when and how in this situation?

[ Dignity ]

2.5 How did this situation make you feel and why? (For example, did you feel respected/not respected, ignored/cared for, worthy/unworthy?)

2.6 What made you feel that way?

2.7 Why do you think people treated you that way?

[ Autonomy ]

2.8 Did you feel that you had a choice about what happened to you? Why? or why not?

2.9 If you had a choice, would it have made a difference to what happened?

For situations where there are clear issues related to choice and making a decision yourself (Self-Determination) ask:
  1. Did you want to make a different decision or did you want to do something else? What was the different decision or did you want to do?
  2. Did you have enough information to make that decision?If not, why not? What prevented you from having enough information?
  3. Did you feel pressured to act the way you did? Who / What was pressuring you? How did it make you feel?
[ Inclusion ]

2.10 Did people in your community who knew or saw what happened to you do anything about it?

If yes, who?

Monitor:
interviewee does not need to give someone’s name here – can give general description of the person e.g. “neighbour”, “sister”, etc.

What did they do?

For situations where there are clear issues related to Inclusion ask:
  1. Were you kept apart or left out in this situation?
  2. Did you need a service or some assistance so that you could participate?If yes, what service(s) or assistance did you need?Did you receive it?If you did not receive it, how did that affect you?
[ Non-Discrimination & Equality ]

2.11 How do you think your disability affected what happened to you?

2.12 Do you think that people without disabilities would be treated the same way you were?

Why or why not? How would they have been treated?

For situations where there are clear issues of Discrimination and Inequality ask:
  1. Do you know anyone else who was treated in the way you were?
[ Respect for Difference ]

2.13 Were you treated the way you were because people thought you were different?

If yes, why?

2.14 Do you think that a person without a disability would have been treated in a similar way in this situation?

why? or why not?

2.15 Do you feel that people label you and then treat you differently because of the label?

If yes, what label do they use?

How does this label affect you?

For situations where there are clear issues related to Respect for Difference ask:
  1. Would someone of a different ethnicity be treated that way? Why? or why not?
  2. Would a woman be treated that way? Why? or why not?
  3. Would a poor person be treated that way? Why? or why not?

2.16 Did you report the situation to anyone? Yes or no?

  • If you reported the situation, what kind of person/organization did you report it to?
    • government official
    • police officer
    • army officer
    • NGO employee
    • religious leader
    • cultural leader
    • ombudsperson
    • other (specify)
  • how did that person react?
  • what action was taken?
  • If you did not report the situation to anyone, why did you not report it?

2.17 In your opinion, what action[s] should be taken to improve [or prevent] the situation in the future?

2.18 Is there anything else that you would like to tell us about that situation?

Monitor:
Here you will move on to the 3rd situation…

3.1 Do you recall another particular time or event in the last five years when you were left out or treated badly or prevented from participating because of your disability?

3.2 What happened? Where and how did it happen?

3.3 Is this still happening or did it just happen once?

3.4 Are there other details that you want to share with us about what happened, when and how in this situation?

[ Dignity ]

3.5 How did this situation make you feel and why? (For example, did you feel respected/not respected, ignored/cared for, worthy/unworthy?)

3.6 What made you feel that way?

3.7 Why do you think people treated you that way?

[ Autonomy ]

3.8 Did you feel that you had a choice about what happened to you? Why? or why not?

3.9 If you had a choice, would it have made a difference to what happened?

For situations where there are clear issues related to choice and making a decision (Self-Determination) ask:
  1. Did you want to make a different decision or did you want to do something else? What was the different decision or did you want to do?
  2. Did you have enough information to make that decision?If not, why not? What prevented you from having enough information?
  3. Did you feel pressured to act the way you did? Who/What was pressuring you? How did it make you feel?
[ Inclusion ]

3.10 Did people in your community who knew or saw what happened to you do anything about it?

If yes, who?

Monitor:
interviewee does not need to give someone’s name here – can give general description of the person e.g. “neighbour”, “sister”, etc.

What did they do?

For situations where there are clear issues related to Inclusion ask:
  1. Were you kept apart or left out in this situation?
  2. Did you need a service or some assistance so that you could participate?If yes, what service(s) or assistance did you need? Did you receive it?If you did not receive it, how did that affect you?
[ Non-Discrimination & Equality ]

3.11 How do you think your disability affected what happened to you?

3.12 Do you think that people without disabilities would be treated the same way you were?

Why or why not? How would they have been treated?

For situations where there are clear issues of Discrimination and Inequality ask:
  1. Do you know anyone else who was treated in the way you were?
[ Respect for Difference ]

3.13 Were you treated the way you were because people thought you were different?

If yes, why?

3.14 Do you think that a person without a disability would have been treated in a similar way in this situation?

Why? or why not?

3.15 Do you feel that people label you and then treat you differently because of the label?

If yes, what label do they use? How does this label affect you?

For situations where there are clear issues related to Respect for Difference ask:
  1. Would someone of a different ethnicity be treated that way? Why? or why not?
  2. Would a woman be treated that way? Why? or why not?
  3. Would a poor person be treated that way? why? or why not?

3.16 Did you report the situation to anyone? Yes or no?

  • If you reported the situation, what kind of person/organization did you report it to?
    • government official
    • police officer
    • army officer
    • NGO employee
    • religious leader
    • cultural leader
    • ombudsperson
    • other (specify)
  • how did that person react?
  • what action was taken?
  • If you did not report the situation to anyone, why did you not report it?

3.17 In your opinion, what action[s] should be taken to improve [or prevent] the situation in the future?

3.18 Is there anything else that you would like to tell us about that situation?

Note
Turn tape recorder off now

C. Follow-up & Verification Information:

Is there anyone we could contact who saw what happened to you or who could provide us with more information about the situations you have raised?

For 1st situation:
  • What is their name? [record name on Coding Sheet]
  • Can we contact this person? Yes or no?
    • If yes, what is the best way for us to contact him or her?
  • [record details on Coding Sheet]
For 2nd situation:
  • What is their name? [record name on Coding Sheet]
  • Can we contact this person? Yes or no?
    • If yes, what is the best way for us to contact him or her?
  • [record details on Coding Sheet]
For 3rd situation:
  • What is their name? [record name on Coding Sheet]
  • Can we contact this person? Yes or no?
    • If yes, what is the best way for us to contact him or her?
  • [record details on Coding Sheet]
Note
Turn tape recorder back on now

D. Background Information:

Now, if you don’t mind, we would like to ask you a few questions about yourself.

4.1 What is your sex?

4.2 In what year were you born?

4.3 How would you describe your disability? [choose as many as apply]

  • mobility
  • sensory – if so,
    • blind
    • low vision
    • deaf
    • hard of hearing
  • intellectual
  • psychiatric
  • other (ask interviewee to specify)

4.4 How long have you had your disability?

  • since birth
  • since (ask interviewee to specify the year)

4.5 Did you go to school? Yes or no?

  • If yes, what kind of school? [choose as many as apply]
    • primary
    • secondary
    • trade school
    • college or university

4.6 Is there a specific place where you live? Yes or no?

  • If yes, do you
    • own that place?
    • lease that place?
    • rent that place?
  • Is the place in a permanent building? Yes or no (please explain)?
    • If yes, what is the building made of?

4.7 How far do you live from the City Centre?

4.8 Who lives with you?

Monitor:
interviewee should identify as many as apply
  • no one
  • spouse
  • children [if yes, how many children ?]
  • parent(s) [if yes, how many parents ?]
  • other family member(s) [if yes, how many other family members?]
  • friend(s) [if yes, how many friends ?]
  • other (specify) [if yes, how many?]

4.9 Is there an open or closed sewage system near your home?

  • open sewage system
  • closed sewage system
  • no sewage system

4.10 What do people use to cook with in your neighbourhood?

Monitor:
interviewee should indicate as many as apply:
  • electricity
  • wood
  • paraffin
  • charcoal
  • gas stove
  • dust oven
  • other (ask interviewee to specify)

4.11 How far is the closest police station to where you live?

4.12 How do you get your water for your daily use?

  • in the house
  • centralized source nearby
  • boreholes
  • collected from lake, river, stream or well
  • other (ask interviewee to specify)

4.13 Do you have toilets in your house?

  • yes
  • no, but centralized and accessible
  • no, pit latrines
  • other (ask interviewee to specify)

4.14 How far is the nearest health centre from your house?

4.15 What type of care is offered by the health centre?

  • homeopathic
  • traditional tribal medicine
  • western medicine
  • natural medicine
  • other (ask interviewee to specify)

4.16 Do you have a job? Yes or no?

  • If yes, what is your job? (specify)
    • Do you get paid? Yes or no?

4.17 Would you say that the area where you live is accessible for people with disabilities? Yes or no?

4.18 What makes the area where you live accessible or not accessible?

E. Ending the Interview

  • Do you have anything else that you would like to add?
  • Do you have any final questions for us about the study?
Monitor:
Answer these.
Note
Review briefly what will happen with the information the interviewee has provided, the purpose of the project, and the relevant timeframes.
Note
Thank the interviewee very much for his/her time.
Note
Stop recording the interview now

F. Completing Notes & Transferring Data

Monitor instructions:

  • Remove the used cassette tape from the recorder and write the applicable Interview Code (from Coding Sheet) on the cassette.
  • As soon as possible afterward, monitoring pairs should listen to the tape recording of the interview. If part of a recording is not clear, monitors should clarify these areas on the Interview Notes.
  • The Interview Notes should also contain the following observations:
    1. details about the location of the interview (e.g. type of building, type of room, who else was around, etc.)
    2. details about any challenges faced or interruptions that occurred during the interview [i.e. airplane flew overhead making it difficult to hear responses, lost electrical power so could not see, etc.]
    3. any concerns about the truthfulness of the statements made in the interview – outlining the reasons for these concerns (e.g. answers were very inconsistent, answers seemed rehearsed, etc.)
  • Provide the Project Coordinator with the following documents:
    • cassette recording of the interview – labelled with the Interview Code
    • completed Interview Notes
    • completed Coding Sheet
    • signed Free and Informed Consent Form

End

Appendix 2: DRPI Coding Scheme

Note
Note: Only the codes whose names appears in all capitals are to be used when coding interviews. The headings Sex, Region, Age Range and Type of Disability should be coded in NVIVO as Attributes, rather than Nodes.

Region

Age Range

  • 18-25
  • 26-40
  • 41-55
  • 56-70
  • 71+

Type of disability

  • Mobility
  • Sensory
    • Blind
    • Deaf
  • Intellectual
  • Psychiatric
  • Other
Human Rights Implications
Life experiences reported by the interviewee as they relate to key human rights principles
Discrimination
Violation or denial of fundamental human rights on the basis of disability
DISCFAM
Violation or denial of fundamental human rights on the basis of disability that took place within the family
DISCSCHO
Violation or denial of fundamental human rights on the basis of disability that took place at school
DISCWK
Violation or denial of fundamental human rights on the basis of disability that took place in workplaces
DISCSOC
Violation or denial of fundamental human rights on the basis of disability that took place in society/community
DISCGVT
Violation or denial of fundamental human rights on the basis of disability that took place in relationships with public authorities
POVERTY
economic deprivation experienced by the interviewee
Dignity
impact of particular life experiences on interviewees’ perceptions of self-worth
Pos Dignity
interviewee reports being respected and valued in her/his experiences and opinions and able to form opinions without fear of physical, psychological and/or emotional harm
POSDIGFAM
Feeling respected and valued in the family context
POSDIGCHO
Feeling respected and valued at school
POSDIGWK
Feeling respected and valued in the workplace
POSDIGSOC
Feeling respected and valued in the community/society
POSDIGGVT
Feeling respected and valued in relationships with public authorities
Neg. Dignity
interviewee reports feeling disrespected and devalued in her/his experiences and opinions and not able to form opinions without fear of physical, psychological and/or emotional harm in consequence of the disability
NEGDIGFAM
Feeling disrespected and devalued in the family context
NEGDIGCHO
Feeling disrespected and devalued at school
NEGDIGWK
Feeling disrespected and devalued in the workplace
NEGDIGSOC
Feeling disrespected and devalued in the community and in society at large
NEGDIGGVT
Feeling disrespected and devalued in relationship with public authorities
Inclusion
Experiences of being recognized as an equal participant and having own needs understood as integral to the social and economic order and not identified as special needs
Inclusion
Experiences of being recognized as an equal participant and/or supported in own needs
INCPHYS
Experiences of inclusion and access to the physical environment (including transportation)
INCCOM
Experiences of inclusion and access to communication with others
INCEDU
Experiences of inclusion and access to education
INCWK
Experiences of inclusion and access to work
INCGVT
Experiences of inclusion and access to public services and authorities
INCRELIG
Experiences of inclusion and access to a religious community
Exclusion
Experiences of segregation, isolation and/or lack of support to own needs on the grounds of disability
EXCPHYS
Experiences of segregation, isolation and/or lack of support in the physical environment
EXCCOM
Experiences of segregation, isolation and/or lack of support in communication
EXCEDU
Experiences of segregation, isolation and/or lack of support in education
EXCWK
Experiences of segregation, isolation and/or lack of support in the workplace
EXCGVT
Experiences of segregation, isolation and/or lack of support in relationships with public authorities
EXCRELIG
Experiences of segregation, isolation and/or lack of support in the religious community
Equality
having own differences respected and disadvantages addressed and being able to participate fully in equal terms
EQFAM
having own differences respected and disadvantages addressed and being able to participate fully in equal terms within the family
EQSCHO
having own differences respected and disadvantages addressed and being able to participate fully in equal terms at school
EQWK
having own differences respected and disadvantages addressed and being able to participate fully in equal terms at work
EQSOC
having own differences respected and disadvantages addressed and being able to participate fully in equal terms in the community or society at large
EQGVT
having own differences respected and disadvantages addressed and being able to participate fully in equal terms in relationships with public authorities
INEQUALITY
interviewee reports a lack of respect for her/his differences, a lack of consideration for her/his disadvantages and not being able to participate on equal terms.
INEQFAM
Not having own differences respected and disadvantages addressed and not being able to participate fully in equal terms within the family
INEQSCHO
Not having own differences respected and disadvantages addressed and not being able to participate fully in equal terms at school
INEQWK
Not having own differences respected and disadvantages addressed and not being able to participate fully in equal terms at work
INEQSOC
Not having own differences respected and disadvantages addressed and not being able to participate fully in equal terms in the community or society at large
INEEQGVT
Not having own differences respected and disadvantages addressed and not being able to participate fully in equal terms in relationships with public authorities
Autonomy
ability to make choices and decisions on issues that affect one’s own life (including choosing forms of supported decision-making)
SELF-DETERMINATION
interviewee reports ability to make decisions on issues affecting her/his own life (including choosing forms of supported decision-making)
LACK OF AUTONOMY
interviewee reports inability to make decisions on issues affecting own life and/or being forced into situations on the grounds of disability
Respect for Difference
reports of how society deals with difference
BEING RESPECTED
interviewee reports being respected regardless her/his differences
BEING LABELLED
Interviewee reports being labelled in consequence of disability
BEING DISRESPECTED
Interviewee reports being disrespected on the grounds of her/his disability or difference
INCIDENCE
frequency with which the interviewee reports experiencing discrimination in her/his life
Responses to Abuse & Discrimination
ways in which the interviewee responds or has responded in the past to situations of abuse and discrimination
DISTANCING
when the interviewee chooses to avoid or distance her/himself from situations and contexts in which she/he has experienced abuse and discrimination
RESISTANCE
when the interviewee chooses to keep returning to and or tries to change situations and contexts in which she/he has experienced abuse and discrimination
REPORT/LEGAL ACTION
when the interviewee chooses to report or complain about the situation or context in which she or he has experienced discrimination
Reasons for Not Reporting
reasons that the interviewee gives for not having reported situations or contexts in which she/he has experienced discrimination
‘NOTHING WOULD HAVE HAPPENED’
when the interviewee is convinced that report and legal action would not have had any significant consequences in terms of changing situations and contexts of discrimination, including because she/he does not trust authorities.
LACK OF ACCESS
when the interviewee was prevented from reporting due to lack of access to appropriate administrative and/or legal structures or lack of access to information about how to proceed to make a claim
FEAR
when the interviewee was prevented from reporting for fear of its consequences
LACK OF FINANCIAL MEANS
when the interviewee was prevented from reporting due to lack of financial resources
CORRUPTION
interviewee did not report because she/he knew or thought that she/he would have to bribe the authorities
SELF-BLAME
interviewee did not report because she/he has interiorized feelings of shame and inferiority
Systemic Roots of Discrimination
social, political and economic factors that create the discrimination interviewees experience or have experienced in the past on grounds of their disabilities
ECONOMIC
When the acts of exclusion and discrimination against people with disabilities are related to the ways in which economic (production) activities are organized and delivered
SOCIAL
acts of exclusion and discrimination against people with disabilities are related to the ways in which social (reproduction) activities and social relationships operate and are organized
LEGISLATIVE
acts of exclusion and discrimination against people with disabilities are related to the lack of adequate laws or policies to protect their rights and/or to the way existing laws and policies operate
Recommendations
suggestions to improve the situation of people with disabilities in your country made by people interviewed
RAISE AWARENESS
raise awareness and educate society about disability and how to deal with people with disabilities
ECONOMIC SUPPORTS
government supports to improve access to work for people with disabilities
SOCIAL SUPPORTS
government supports to improve the living conditions and income of people with disabilities and their families
REPRESENTATION
improve the participation and representation of people with disabilities in the government
RESPECT
government should show more respect and be considerate of the needs of people with disabilities
LEGISLATION
develop and implement new laws and policies to protect the rights of people with disabilities
PEER SUPPORT
people with disabilities should get together and support each other
GENDER & DISAB
ways in which gender and disability intersect to compound or protect from discrimination
ETHNICITY & DISAB
ways in which ethnicity and/or race interacts with disability to compound or protect from discrimination
CLASS & DISAB
ways in which class (being poor or rich) intersects with disability to compound or protect from discrimination

Appendix 3: Information Sheet for the Study Called Monitoring the Human Rights of People with Disabilities in Andhra Pradesh State, India

This information is provided so that you can make a decision about whether or not you want to participate in this study. We are giving you a lot of information because we want you to be able to make the decision that is best for you.

Sponsors

The study is being sponsored by:

  • Swadhikaar Center for Disabilities Information, Research & Resource Development based in Hyderabad
  • Asmita Resource Centre for Women based in Hyderabad
  • Disability Rights Promotion International (DRPI) which is a research project based at York University in Toronto, Canada

Why are we doing this study?

We are collecting information about the lives and experiences of people with disabilities by talking directly to people with disabilities. We want to see if their human rights are being respected. The information we collect will be studied and reports will be written. The names of participants will not be mentioned in the reports unless they have given us clear permission to do so. The reports will be available to organizations of people with disabilities, other groups working to improve the lives of people with disabilities, the media and governments.

The reports made will be used to:

  • let people know about violations of the rights of people with disabilities
  • help stop human rights violations
  • provide facts to back up arguments for changes in laws, policies, and programs to improve the lives of people with disabilities
  • keep track of the steps that the government has taken or has failed to take in order to fulfill the promises it has made to people with disabilities when it signed agreements at the United Nations saying that it would protect, promote and fulfill the rights of people with disabilities

What will happen in this study and what will you be asked to do?

Our project is going to various countries around the world to talk to people with disabilities about their lives and their experiences.

If you agree to participate, you will be asked a series of questions about your life and your experiences. We will particularly want to know if your human rights have been violated and how they have been violated. In other words, we will want to know if there are unfair things that have happened to you which have stopped you from participating in society in the way that people without disabilities participate in society.

If you agree to participate, you will be interviewed by one or more people with disabilities who are members of a local organization run by people with disabilities. We call these people the ”monitors”. We know that, in the past, people with disabilities have often been left out of research about people with disabilities. We think that it is only fair that people with disabilities play an active role in any research about them.

During the interview, the monitor(s) will take notes. If you give them permission to do so, they will also tape or digitally record the interview so that we can be sure to get all of the information you provide accurately.

Depending on the methods of communication that are used, the complete interview should take approximately 1 to 3 hours to complete.

After the interview, the monitor(s) will give all of their notes and the tape/digital recordings to the person in charge of the project who we call the Project Coordinator. The monitor(s) will not keep any copies and will not talk to anyone except for the Project Coordinator about what you said. The interview will be confidential.

The Project Coordinator will pass the notes and recordings of your interview to the researchers who will study them. Your name will not be on any of the information given to the researchers, they will not know whose information they are studying.

After looking at your information and the information from interviews with at least 50 other people with disabilities in your country, the researchers will write reports that will be given to organizations of people with disabilities, other groups working to improve the lives of people with disabilities, the media and governments. Your name will not be mentioned in the reports without your clear permission.

Are there possible negative things that might happen if you participate in the study?

There are no negative things that will happen to you by participating in this study. However, you may feel uncomfortable when you start thinking about some of the questions that you are asked. For example, you may remember some things that have happened to you that are not pleasant to think about. If that happens, you can take a break from the interview or, if you want, you can stop the interview completely.

If you want to continue to talk about these things, that’s fine, too. If you feel upset about these things, you can ask the monitor(s) for the name of someone you can talk to about your feelings after the interview is over.

Are there good things that might happen if you participate in this study?

You may or may not receive any direct benefit from participation. You might find that it makes you feel better to talk about some of your experiences. Also, we hope that organizations of people with disabilities, the media and governments learn from the studies and reports that are made and take steps to improve the lives of people with disabilities in your country.

Can you decide if you want to participate in the study?

You are free to choose to participate or not to participate in the study and you may choose to stop participating at any time. Your participation is completely voluntary. Your decision not to participate in the study will not influence your ongoing relationship with any of the study sponsors, monitors or any other person or group associated with the project.

Can you stop participating if you don’t want to continue participating?

If, at any time during the study, you want to stop participating, for any reason, just let the monitor(s) know and they will stop asking you questions. If you want to answer some questions, but not others, you can do that, too. It is entirely your decision.

If you decide not to participate in the study, or if you decide to stop participating in the study, we will not use your information for our research. Any notes or recordings made up to the point you decided to stop will be destroyed. Also, if you decide to stop participating, you will still receive your honorarium for agreeing to take part in the project. Your decision to stop participating, or to refuse to answer particular questions, will not affect your relationship with any of the study sponsors, monitors or any other person or group associated with the project. No one will treat you any differently if you decide that you do not want to participate in the study.

Will your information be kept confidential?

The information you provide will be kept confidential within the limits of the law. Unless you specifically provide your consent, your name will not appear in any report or publication of the research. The notes and recordings of your interview will be safely stored in a place that is locked and will be destroyed at the end of the project. You should know that there are certain types of information that the monitors would be required by the laws of your country to tell the authorities about if you mention them in the interview. These issues are: (list mandatory reporting issues for study country).

Costs and Compensation

You will be given an honorarium of (insert appropriate amount given the study country) to cover your transportation to the interview location and the cost of any disability-related supports or assistance that you will need in order to participate in the interview. If you would need additional money to get the supports that you need to participate, please let the monitor(s) know the details. You will receive this honorarium within one month of your interview. You will receive this honorarium even if you decide to stop participating in the project at some point during the interview and/or decide not to answer certain questions.

If you have questions about the study

If you have questions about the research in general or about your own role in the study, please feel free to contact:

M. Pavan Kumar – Project Coordinator, Monitoring the Human Rights of People with Disabilities in Andhra Pradesh State

  • Regular mail: Plot No. 59, Street No.2, Devi Nagar, Neredmet, Ranga Reddy District – 500 056 Andhra Pradesh State
  • Telephone: 91 40 2722 0455
  • Email Pavan Kumar

or

Dr. Marcia Rioux – Co-Director, Disability Rights Promotion International (DRPI) Chair & Professor, School of Health Policy and Management, Atkinson

  • Regular mail: York University, 441 HNES Building, 4700 Keele Street, Toronto, ON, M3J 1P3, Canada
  • Telephone: +1-416-736-2100 extension 22112
  • Email Marcia Rioux

Appendix 4: Free & Informed Consent Form

I have read and understood the preceding pages of this Information Sheet and Free and Informed Consent form. The research procedures mentioned above have been explained to me and all of my questions have been answered to my satisfaction. I have been informed that I can withdraw from the study at any time without penalty and that, if I choose to do so, any data collected as a result of my participation will be destroyed. The potential discomforts that I might experience because I have participated in the study have been explained to me. I also understand the potential benefits of being a part of this study.

I know that I may ask now, or at any time in the future, any questions I have about the study. I have been assured that the records, transcripts, and tapes related to this study will be kept confidential to the limits of the law. I have also been assured that no information will be released or printed or made public that would disclose my personal identity unless I give permission for that to happen.

I hereby consent to participate in the interview

Printed Name of Participant:

Signature of Participant:

Date:

I hereby consent to having my interview recorded

Signature of Participant:

Date:

Signature of Principal Investigator:

Date:

Please Note: This research has been reviewed by the Human Participants in Research Committee, York University’s Ethics Review Board, and conforms to the standards of the Canadian Tri-Council Research Ethics guidelines and the York Senate Policy on research ethics. If you have any questions about this process, or about your rights as a participant in the study, please contact:

Ms. Alison Collins-Mrakas – Manager, Research Ethics,

  • York University mail: 277 York Lanes, York University, Toronto, ON, M3J 1P3, Canada
  • Telephone: +1-416-736-5914
  • Email Alison Collins-Mrakas

If you would like to contact the Human Participants in Research Committee, please send your correspondence care of Ms Collins-Mrakas at the above regular mail or email address.

swadhikaar centre for disables information logo
DRPI Logo
nimh logo

nalsar hyderabad logo
AP state legal services authority logo
Asmita resource centre for women logo

Leonard Cheshire International Logo

Group photo of participants of the International Training Seminar in Andhra Pradesh, India