1. Discussion of Findings - 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).

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.

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.

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.

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.

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.

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