Living With a Disability: A quest for self discovery | The Odd Angle

Living With A Disability: A Quest For Self-Discovery

Living with a disability is hard but what makes it even more harder is the stigmas that are attached along with it. Disability is generally seen as biogenetic phenomena, has to be understood sociologically. It should be studied as a biosocially constructed phenomena. The stigmas that are attached to disability crumble the self-worth which largely impacts the personality of an individual. So, I will be reflecting on my own experiences as a girl with visual impairment in order to shed light upon social nature of disability as much of the individual struggles of people with disability manifest at a social level. I argue that due to low self-efficacy that stems from various notions regarding disability, the soul of people with disability is not only crumbled in everyday life but their voices are often silenced on various issues with immense stigmas attached with their identity thereby raising questions of agency.

My story

When I was born as the eldest daughter in my family, my family did not know about my impairment. When all the members came to know about my impairment after six months, they reacted with a sense of shock and were at a verge of despair. However I have been fortunate enough to be blessed with wonderful parents who gradually accepted me with my impairment. Here I see myself at privileging position than most of the women with disability who are not equally fortunate as many of them are abandoned by their own parents in villages. I have been fortunate enough to be blessed with father who I see as the best man in this world. He encouraged and supported me to move forward in my life and achieve the best education as possible. My parents had a firm decision in their heart to ensure that I receive the best education but a lot of struggles were awaiting to hinder this decision. In spite of great intelligentsia, I was rejected from 5 to 6 schools due to lack of facilities available to them for providing me with education, which is suppose to be the birth right for all. Finally, I received my education in Greenfields school, Safdarjung enclave and I ranked among the toppers of my school. Then I got admitted to Jesus and Mary college from where I pursued my graduation in sociology.

Furthermore, When I consider the story of my life, I feel that one of the greatest fight that awaits every person with disability is a fight for acceptance. People with disability feel rejected and silenced in their everyday lives because disability is often seen as a sin, as a punishment and sometimes a feeling of awe is also attached with impairment. How would it feel when a teacher writes on the board, and a student with visual impairment can not read it? How would it feel when all the students are enjoying delicious stuffs in the canteen, and a student on wheelchair is left behind in the classroom? How would it feel when all kids of the family are allowed to hang out till late night, and a child with disability is stopped from hanging out and enjoying at night? I have dealt with all these experiences during my childhood and the only question that I always had in my mind is that “Am I Someone Different”? 

Social and religious attitudes associated to disability

When we talk about disability, we usually talk about inclusion of people with disability in a variety of educational institutions and various sectors of economy. But the actual world of the people with disability, the issue of accesibility and acceptance impacting the mental health and psyche remains to be ignored for a long time. Much attention has been paid on incorporating people with disability in the mainstream society but we often do not talk about the struggles of people with disability for acceptance in their everyday lives. Lack of acceptance stems from a variety of notions that are attached to disability. The theory of karma which prevails among Hindus looks at disability as a way of avenging for bad deeds. Even if we consider some of the religious texts like Bible, we can see that a lot of attention has been paid to heal the blindness rather than supporting the idea of real acceptance of blindness. I would like to quote some of the verses from bible which shows the exact religious attitudes that are attached to people with disability. The book of John, Chapter 9, verse 1-3 in the bible says that “As “Jesus went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus replied that “Neither this man nor his parents sinned,”, but this happened so that the works of God might be displayed in him.” So, here we can clearly look into the way in which disability has been seen as a way of glorifying the name of god. Even if we look at book of Markk, Chapter 10, verse 46, a blind man has been depicted as a beggar and he is healed after falling on the feet of Jesus.

So, Given the lack of discussions on disability in schools and colleges, people with disability often struggle to accept themselves among the so called defined perfect people in the world. I remember when I was appearing for a job interview in a company, I was rejected on the grounds of my impairment as there was an assumption that people with disability can not work at an efficient speed. People with disability are not only rejected in the field of education and other sectors, but they struggle for acceptance in their own family. There are times when my own brothers and sisters do not ask me for traveling with them and eat with them. Lack of acceptance is also visible in affectual relationships specifically in dating cultures where females with disability do not get to experience love and feel special like other girls who are defined as perfect and normal (non-disabled) which points towards the belief and notion about to see PWDs as not-normal or imperfect. This belief stems from an assumption that women with disability are asexual and they are not capable of being tuned to sexual impulses. Much of the literature on disability does not even talk about sexual rights and parenting rights of the people with disability. Females with disability not only deal with their disability but they also fight with the standards that are defined by the society for a perfect woman. A woman is often seen as a nurturer and a care giver; and women with disability fail to qualify themselves as perfect women as there is an assumption that they can not nurture and provide care. The feminist discourse has also not talked about this reductionist perspective to view relationships merely on the basis of procreation and motherhood pertaining to women with disability. It's not the accessibility issues for women with disability but also acceptability issues for disability issues in feminist discourse.

Personal struggles of people with disability

The struggles of people with disability are not only manifested at a social level but they are also manifested at personal level where there is a continuous struggle for one’s own self-acceptance. White cane becomes a clear identity for a blind and a wheelchair becomes the only identity for a crippled. Fight with ableism continuously manifests in the lives of people with disability as they are continuously reminded that they are imperfects in the world of perfect people. People with disability also struggle with loneliness in their lives as they do not get opportunities to construct fruitful bonds and friendships. I did not have much friends during my school days and I usually felt loneliness in the classroom. While other students would hang out in playgrounds and read in library, I was left behind in the classroom. While others would hang out with their friends in the canteen, I would eat my food alone without any companionship. When I would share my sorrows with anyone in my school, they would motivate me by over-romanticizing my impairment. They would say “you have something that others do not have, you are the topper of the class, just focus on your studies and playgrounds are not meant for you”. So, the point that I try make is that people with disability are sidelined from the mainstream society in spite of various efforts to strive for inclusivity. Self-acceptance of impairment can be so hard that resistance does not remain to be an option.

Furthermore, This reason for lack of self-acceptance stems from a belief that disability is supposed to be equated with sympathy. People with disability are not allowed to take risks in life and they are not allowed to fall down and get wounded. People with disability are constantly told to live with fears which makes them incapable to deal with the challenges of life. They are treated with an over-protective attitude which gives rise to a feeling of low self-efficacy and low self-confidence among them. A sense of self-efficacy is a basic need for all individuals which has been denied to people with disability for a very long time. I remember the time when I met a child who was crippled and could not walk. He belonged to a village and his parents never allowed him to use a wheelchair. When I asked about the reason of not allowing him to use the wheelchair, they began to question me with a sense of astonishment. They began to say that “what if he falls down?” “what if he runs away from home and how will we find him?” “what will others think about our family, seeing our child on a wheelchair”? This child also has a real sister but even his real sister does not share a fruitful relationship with him and she considers him as a burden and a responsibility. The only question that came in my mind after meeting him was that what would be a mental condition of this child? He is not allowed to explore his own identity and he does not have anyone to enlighten him. Even till today, carrying a white cane and using a wheelchair is often viewed as a sign of disgust, and it is viewed as a symbol of shyness. Such notions of sympathy not only make people with disability To be dependent on others but they affirm that disability is something to feel sorry about, and staying silent remains to be an only option for them.

Here I have pointed out the Socio-psychological aspects pertaining to the disability which exposes social reality and underlying notions in sympathetic nature of people towards PWDs. The sympathy should not be only seen as behavioural aspect between person with disability and non-disabled but the idea of privilege needs to be defined in this relationship, the origin of sympathy comes at prenotion that there is something wrong in being born as PWD, thereby putting sympathizer at pedestal and making the other feel low and dishonored.

Sympathy should also be viewed psychologically where often sympathizer feels good by actually helping, it does not help because other needs it but somewhere to satisfy it's own need to feel positioned and privileged thereby satifying own Ego.

We as disabled do not actually desire for sympathy, we need acceptance, accessibility and more importantly Empathy, non-disabled needs to understand the situation not try to appropriate us with sympathy. They need to feel what we feel. Society needs to know how it feels when we are not even allowed to fall, when our success comes as shock, it hinders our liberty and freedom as individuals. I would define those notions, beliefs and expectations for PWDs as socially constructed cage and Individuals as bird into it. As for canary in cage where it is seen to be cared and under constant notice however it's freedom is also undermined forever. A bird can learn to fly no matter what but it's the cage which make it disabled.

Conclusion

I have argued that people with disability tend to suffer from adverse anxieties due to lack of self acceptance. They are expected to fight a war of achieving acceptance on a social level and personal level. People with disability need to be vocal about their issues and questions that keeps graved in their minds. Even scholars should focus upon individual and personal struggles to understand the Psycho-social aspects of disability. They should be allowed to take risks in life and allow themselves to play and fall like others. Wholistic discussions about disability in educational institutions are absolutely required so that there is more awareness about the struggles of people with disability. Discussions on disability should not be limited to workshops, webinars and seminars but a discourse on disability should be a part of curriculum in various disciplines. We need to understand that the idea of inclusivity is beyond introducing lifts and disabled friendly buildings. Inclusivity is a practice and this idea calls for real acceptance of disability and a space where the identity of people with disability is not looked with a sense of awe or disgust. At the end, I advocate that People with disability have to be educated, empowered and encouraged. Disability is not a sin, rather it is an opportunity to change the world with one’s own abilities and create a difference. 

Authored by: Surbhi Nagpal, MA Sociology, DSE 

Edited by: Jatin Mathur 

Note: Surbhi is my friend whom I met in Master's program at Department of Sociology in DSE, her story is not just inspiring but it offers many lessons to learn as Non- disabled. I had my first close interaction with Visually impaired individuals when I developed friendships with Ajay, Ghanshyam and Harshit at Hansraj college Hostel. They helped me a lot in making sense of disability related issues and marginalization.

There on I always wanted to familiarize people about disability from the insider's perspective and a sociologist like Surbhi made it easy for me as she agreed to publish it here at The odd Angle. 

Thank you surbhi.