Narratives of Women with Disabilities: Unraveling the Intersections
By Jyotishmita Sarma
Persons with disabilities constitute a significant proportion of the world’s total population. In spite of this, we know very little about their lives, perhaps due to the absence of any direct contact with them. As a result, different misconceptions abound about their lives and experiences, shrouded in the garb of personal tragedy, demanding pity and sympathy from the wider society. Underlying such misconceptions is the supposition that all persons with disabilities lead a homogeneous life which is limited by their impairments, and thus, is unworthy of living. But do such misconceptions bear any semblance to the lives of persons with disabilities as actually lived by them? Do all persons with disabilities have similar life trajectories? In what way does the presence of impairments shape their lives? How does disability intersect with other markers of identity to shape their experiences?
This essay attempts to demystify some of the commonly held misconceptions about the lives of persons with disabilities through the narratives of four women with different locomotor disabilities, residing in a rural and an urban set up in Assam. The narratives try to elucidate the point that although impairment plays a significant role in the lives of these women, it is not the single factor that shapes their lives. The nature and degree of the impairment intersects with other key aspects of their lives such as gender, marital status, social class, place of residence (whether urban or rural), level of support from the family and the community, education and employment status, to create unique experiences. These narratives provide insights about the heterogeneity of disability experience, and challenge the popular notions of living a life with disabilities.
Disabilities are a Result of Sins Committed in Previous Birth
One of the commonly held misconceptions is that disability is a result of sins committed by the individuals or by their family members in their previous lives. Such an assumption negates the reality of the circumstances within which disabilities are created and sustained. It also reinforces the otherness of persons with disabilities for whom the wider society has no compassion. What this misconception masks is that as human beings we are all temporarily able bodied and are likely to be acquainted with the experience of disability at any point in our lives.
Anjali, 38, acquired her disability when she was only 22-days-old after a surgical intervention on her buttock to remove an abscess in a government hospital. The intervention had accidentally severed a nerve, as a result of which she is not able to walk straight. She had to struggle a lot in her life, not so much for her impairment, but for the conditions in her family. Her mother passed away when Anjali was only 3-years-old, while her father was an alcoholic and spent much of his time drinking with his friends. From the tender age of 10, Anjali and her younger sister had to manage both household and agricultural chores. Presently, she is working as a Community Based Rehabilitation Worker in a disability organization in her Panchayat Block, and this experience has changed her life. The work involves immense physical exertion but despite this, she loves her work as she has become a sort of inspiration for other persons with disabilities in her area. Anjali is the sole breadwinner for her family. She feels anxious about the future as she is not sure whether she will be able to continue working till her old age because of her physical difficulties.
Anjali’s narrative shows that her disability is not a result of her own mistakes, but is a mistake of an inexperienced doctor. Her life’s struggles were aggravated by her mother’s death and her father’s alcoholism. Regardless of all her adversities, she does not live a life of despair. Through her indomitable spirit, she is determined to change the situation of her own life and the lives of her family members. But the reality of her physical difficulties still remains in the back of her mind, because of which is forced to think about a dark future.
Persons with Disabilities are a Burden on their Family
Persons with disabilities are considered to be a drain on the family resources, because of two reasons: a) they do not contribute their labour to the family, b) other members of the family need to forgo their own labour in order to take care of them. This is not true for all persons with disabilities, as many actively contribute to the family, financially or through their physical labour, or both.
Dalimi, 34, was born with weakness in her left foot. In her natal family, she trained herself to do all kinds of household and agricultural chores, including working in the loom, which requires tremendous physical strength. She got married in 2007, and has a 7-year-old son. Dalimi’s husband has typhoid-induced disability and this enables him to understand her difficulties. He also helps her with her household chores. Dalimi enjoys doing all kinds of household and agricultural chores, but her husband does not allow her to engage in physically strenuous activities, from the fear that this would aggravate her physical difficulties.
Bijoya, about 34, is of short stature. She met her husband in 2010. After 8 months of courtship, they eloped and finally got married with the consent of her family. She has faced discrimination at her in-law’s place as they feel that their ‘good looking’ son should not have married a ‘short’ woman. Bijoya says that despite her disability, she is not dependent on her husband for anything. It is, in fact, her husband who is dependent upon her for every little thing, whether it is his meals, clean clothes, or the loan she had taken to open the shop which is their source of livelihood.
The above narratives break the stereotype about persons with disabilities, that they are dependent on their families. Dalimi and Bijoya are both efficient in household work which makes other members of their families depend on their labour. While Dalimi’s husband’s own experience helps him in understanding Dalimi’s difficulties, it is not the same in the case of Bijoya, whose husband requires constant attention from her. Their narratives go on to defy another misconception about women with disabilities, that they are undesirable for marriage because of their inability to maintain the household. The dependence of other family members on their labour is a source of immense pride for both of them.
Persons with Disabilities do not Lead a Satisfying Life
Another commonly held misconception is that persons with disabilities are miserable because of the inadequate lives they lead. This is also not true for all persons with disabilities. Joya, 35, was born with cerebral palsy. Her parents admitted her to a school for children with multiple disabilities when she was about eight years old. During assessment in the school, it was found that although she has difficulty in balancing herself while walking and her speech was affected, she was intellectually sharp. Due to this, she was encouraged to study. Joya was also encouraged to take part in extra-curricular activities in the school. She was interested in painting and was a part of the drama society in her school. She had represented her school in various events in Guwahati, Kolkata, and New Delhi. After passing high school, Joya found a job in the same school. But she was not able to continue working for long as a result of a fall that severely affected her spinal cord, and left her a persistent backache. She is now volunteering in the Information and Communications Technology (ICT) unit of her school. Joya feels that she is an inspiration for other younger girls in her neighborhood as despite all her physical difficulties she has not been restricted by her impairment.
The above narrative shows that the presence of impairment does not make the lives of persons with disabilities devoid of meaning as despite all her constraints, Joya tried to overcome her difficulties. The support from her school and family has helped her immensely in dealing with her disability since her childhood.
Thus the narratives of four women with different locomotor disabilities reveal the contradictions of their lived experiences with the misconceptions that are commonly held about them by the wider society. They are usually thought to be victims of personal tragedy. The narratives show that the experiences of women with disabilities are not homogeneous and highlight that although impairment plays a significant role in shaping their lives, a myriad of other factors are also equally important.
 The narratives were collected as part of the author’s doctoral research on the lived experiences of women ageing with locomotor disabilities in Greater Kamrup, Assam.
 Pseudonyms have been used in order to protect the identities of the participants of the study.
Jyotishmita Sarma is Doctoral Candidate, Centre of Social Medicine and Community Health, Jawaharlal Nehru University, New Delhi. Email: firstname.lastname@example.org
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