Crossing The River Of Discourse On A Hired Boat
Jyotishmita
Every researcher might always be haunted by certain questions for which they seek answers in each and every step. One does not really know what triggers these questions. Such questions may not necessarily have arisen in the course of your academic journey or during the preparatory period of your research work. In fact, the instances which stimulate such questions vary according to people. As one converses and listens to a researcher, the unique stories, insights and outlooks of her/his get unravelled and they take us to where she/he has actually begun. For Jyotishmita, it came from her own personal experience of having a family member with disability.
11 years ago, Jyotishmita’s father became paralysed after an episode of stroke at the age of 64. All of a sudden, a person who was physically active throughout his life became incapable of moving from one place to another without support. In medical term it is called locomotor disability. This incident changed the dynamics of Jyotishmita’s parents’ relationship with each other and led to a lot of suffering for both of them. This experience also reminded Jyotishmita of her mother’s stories of her own parents both of whom become impaired in their adulthood due to different ailments. These stories from her own family often revealed her how all these different people were treated differently in the society because of the gender differences.
Jyotishmita, or ‘Jo’ or ‘Jyoti’ as known in her close circles, submitted her PhD thesis at the Centre for Social Medicine and Community Health (CSMCH) in the School of Social Sciences of Jawaharlal Nehru University (JNU), in July 2019. She explored the lived experiences of women ageing with locomotor disabilities acquired early in life. She studied women who had acquired their impairments below 20 years of age in the Kamrup Metropolitan District of Assam, her home state. Through this particular study she was able to foreground how women with locomotor disabilities explain the occurrence of their disabilities, the level of social support they receive, the corporeal and the psycho-emotional dimensions of living a life with disabilities and how disability intersects with other markers of identity to create unique experiences for them.
Jyoti, while pursuing MA in gender studies, found that what her parents went through had no place in what she was studying because disability was a much neglected issue in gender studies. These experiences urged her to delve deeper into this issue in her own research work. She believed that it is important to make sense of the lives of people with different kinds of locomotor disabilities by focusing not just on the impairment, but a myriad other factors that shape their lives. Jyotishmita had an exciting journey with her topic, exploring the lives and struggles, which eventually culminated into a delightful thesis.
Now working as a Research Assistant in a WHO-funded project on “Integration of Health Services for Older Persons in the Urban Context”, while waiting for PhD viva to get over to officially receive her degree, Jyotishmita shares her story with us.
Any health issue is a social issue and vice-versa. Similarly disability is also a health issue and a social issue. Through my research I wanted to incorporate the three streams that I have pursued in my academic career- Sociology, Gender Studies and Social Sciences in Health. All of these disciplines have helped me in pursuing my topic of interest, that is, disability in the context of a developing country from an interdisciplinary perspective.
Why disability?
If you look at the statistics, you would understand the importance of this study. According to the World Report on Disability (2011), the global estimate of disability among the adult population (15 and above) is between 15.6 and 19.4 per cent. A majority of this population reside in the developing countries, even though the official statistics in these countries record a much lower prevalence due to the narrow definitions used while collecting data. With the second largest population in the world, India is expected to have a very high population of persons with disabilities. However, in the 2011 census, the total population of persons with disabilities is only 2.21 per cent of the total population. This is considered to be a gross underestimation of the total population of persons with disabilities in the country as alternate estimates that have used broader definitions suggest a higher incidence of 4-8 per cent.
Notwithstanding this statistics, what is important to understand is that the total population of persons with disabilities is increasing worldwide due to a number of factors such as wars, ethnic conflicts, HIV/ AIDS, industrial injuries, road accidents, population growth, medical advancement and increasing life expectancy that make people more susceptible to old age related, chronic health induced disabilities. All these factors make it very important to understand the lives of persons with disabilities in order to ameliorate their conditions. At the same time it is also important to understand that there are different kinds of disabilities and how a disability is experienced depends upon a host of other intersecting factors. This study is particularly about women with locomotor disabilities in a particular context in Assam and these findings cannot be generalized for women with other types of disabilities living in other contexts. For greater understanding of different disabilities and how it impacts the lives of individuals, more studies need to be conducted.
Geographical area and the people
The study was conducted in the district of Kamrup Metropolitan in Assam. I initially chose to work in Assam because very few studies have been conducted in this state in the area of disability. My own M. Phil study, for example, was conducted in the Delhi-NCR region. During the course of my PhD research, however, I realized the importance of understanding the broader context in which research is carried out. Assam’s case is very interesting in this regard because of its multi-ethnic character and due to this, its propensity for conflicts since the time of independence. Through this study I have tried to understand what it is like to have a disability in this particular state given this backdrop.
Since people with disabilities are often scattered in the community and also live a stigmatized life, disability researchers often use the help of disability organizations to recruit participants for their studies. I also decided to use the same strategy for my research, although it had its own limitations. The district of Kamrup Metropolitan was selected for the study because of the presence of a number of disability organizations. Additionally, in a predominantly rural state, Kamrup Metropolitan was overwhelmingly urban, which gave it a unique character. For this study, I had received help from four different disability organizations for recruiting the study participants, three of these organizations were working in the urban areas of the district, and one in the rural areas. In total 23 life history interviews were conducted with women with different locomotor disabilities, out of which 18 were included in the study based on the inclusion criteria. Apart from these women, their family members, members from the disability organizations and health personnel from the tertiary care centres were also interviewed for a better understanding of their lived experiences.
Every site is unique
I learned a lot about Assam’s multi-ethnic culture during this period. The interviews with my research participants and their family members opened the window to understand the many differences between me and them and brought into view several nuances about our class backgrounds, ethnicities and rural/urban upbringing. During discussions with my faculty and fellow-researchers, I have often been asked about the caste backgrounds of my research participants and whether it holds any importance in a study on disability and gender. While I would not negate the importance of caste, I would emphasize that it is important to understand the nature of social stratification prevalent in a particular society. In the case of Assam, it is largely ethnicity and language that people consider more significant than caste or religion, as it might have become clear from the recent protests against the CAA. This made me read and spend a lot of time on the socio-political history of Assam from the pre-colonial to the present period for a better understanding of the issues prevalent in the state. It was, however, worth the effort. I would urge all aspiring researchers to understand the relevance of understanding the context of their study from a historical perspective because every site is unique which in turn shapes people’s lives in different ways.
Not an easy journey, but exciting
One of the primary difficulties that I faced while conducting this research was contacting the disability organizations and seeking their permission for the interviews. In certain cases, the organizations were not interested in participating in the study, while in others they did not have contact with the population that I was interested in. This was in stark contrast with my experience with disability organizations during my M. Phil research in Delhi-NCR because the number of organizations was much more and they were also more exposed to the idea of social sciences research. Eventually I had to make certain changes in the inclusion criteria to be able to conduct the study. Secondly, not being from a medical background posed a problem sometimes because I was not able to understand the condition that my research participants were suffering from. In certain cases, my research participants and their family members also asked me about medicines for curing their conditions! Thirdly, most of the interviews were conducted either in the disability organizations or in the homes of the research participants as per their convenience. We were always surrounded by so many people that sometimes it became very difficult to ask personal questions as per the requirements of the study. In certain cases, the women also cried while sharing their experiences. But when the interview got over most of them seemed to be happy that they got the opportunity to share their experiences with someone as it seemed that their impairments was a taboo subject that was not discussed at their homes.
In a few cases in the rural areas it was also difficult to find transportation to the homes of my research participants. For the interviews I had to walk for one-one and half hours sometimes. In other instances I had to hire a country boat to cross a river (tributary of Brahmaputra) which was only accessible in the winter months, as it was over flooded in the monsoon season. Although I found the experience very exciting, what is important to highlight is that lack of transportation facilities made the lives of the people in the village very difficult, irrespective of their disability. Finally it was very difficult to interview the health personnel from the Guwahati Medical College and Hospital for the study due to their very busy schedules. After seeing their plight I even felt guilty at times about engaging them in the interview when they could be treating the patients that surrounded us. On the other hand, the interviews with the health personnel in the private hospital were more relaxed. Even though they also had a lot of patients, they were still able to take out time with minor distractions. This clearly brought out the work burden that the health personnel in the public sector are facing in this country.
Treat disability as it is, and speak the truth with solidarity
In every field there is some level of orthodoxy that is difficult to shake off and similar is the case in the field of disability. In much of the literature on disability studies that has emerged from the developed countries, the discussion revolves around the significance of the ‘social model’ vis-à-vis the ‘medical model’ in the lives of persons with disabilities. Such discussions are also sometimes extrapolated in the context of persons with disabilities in the developing countries, without any consideration for the differences in the context (scholarly colonialism). So one of the objectives of this study was to critique this ‘social model’ understanding of disability by trying to understand how the research participants of this study explain the occurrence of their disabilities. It was found that the women held a lot of factors responsible for their disabilities, which include their kopaal (fate), poverty and ‘bad’ doctors. It was also found that medical explanation about their conditions was very important as it helped them in psychologically adjusting to their impairments. This finding is very significant because disability scholars, mostly from the West, often negate the importance of medical support or medical explanations in shaping the lived experiences of persons with disabilities. This, however, is an ethnocentric view as in contexts such as India access to healthcare services is limited by a number of intersecting factors that may in turn result in disability.
Family
Another major finding was that there is negligible state support for this population because of which they have to depend on their families and disability organizations for their upkeep. Within the family, it is usually parents who look after them as marriage is often not an option available to women with disabilities. With the passage of time, as parents grow older and the women’s health condition begin to deteriorate, this leads to a lot of tension regarding what would happen in the future and who would take care of them. Due to growing individualization and lack of adequate financial resources, many of these women do not trust their siblings to care of them in the future.
Organisations for disabled
The disability organizations provide a lot of support in terms of introducing them to a community of persons with disabilities where they are able to share their concerns with each other. Depending on the nature of these organizations, they also help them with different things like education, access to disability certificates, healthcare facilities, aids and appliances and so on. However, these organizations have their own limitations in terms of their limited reach and the necessity of adhering to the terms and conditions of the funding agencies for the smooth running of projects. This often leads to conflicts of interest between the members of the organization and persons with disabilities who feel betrayed that their concerns have not been met. What makes matters even more precarious is that persons with disabilities have limited access to education due to a number of factors including infrastructural barriers, which in turn limit their access to well-paying jobs. This, therefore, leads to a vicious cycle of poverty, disability and dependence on others.
Neither charity, nor abuses: We need a concrete plan
There is a lot that needs to be done in this field. Disability is one of the most neglected topics in India. It is shameful that this community is referred by different derogatory terms that vary from region to region. In Assamese, the women were referred to as lengeri (physically disabled) by the community which was a source of much grief for my study participants. In order to counter such terminologies, the central government under Prime Minister Narendra Modi forwarded the Hindi word Divyang to refer to persons with disabilities as having divine body parts or being imbued with divinity as compensation for their physical impairments. This term invokes the ‘religious/ charity model of disability’ which is much and should be criticized by disability scholars and activists because it does not do anything to improve their living conditions. So instead of such rhetoric and publicity gimmicks, it is important that there is more awareness about disability and persons with disabilities in the community which can only be ensured if persons with disabilities are able to overcome the infrastructural barriers that they regularly face in order to talk about their lives to a larger audience. This along with access to education, employment opportunities and healthcare facilities can go a long way in changing the lives of this community.
At the same time it is also important that the healthcare system is not overburdened. The level of support for the physical rehabilitation of persons with disabilities is limited in the community. Depending on their nature, certain disability organizations provide such services to persons with disabilities but they are far from satisfactory. During the course of my research it was also found that there is no Physical Medicine and Rehabilitation Department even in the Guwahati Medical College and Hospital which is the largest public tertiary care centre in the state and caters to a very large population. Instead the Orthopaedic Department deals with cases of physical disability but unfortunately they lack the workforce to cater to such a large population. Access to healthcare and rehabilitation services for persons with disabilities through public health services system in the neo-liberal era of privatization should be the priority of policymakers, which unfortunately is negated.
The journey is on
In the future I wish to work with the system through advocacy networks or other systemic pathways to bring about better policies for persons with disabilities with adequate consultation with persons with disabilities. I also wish to conduct further research on men with disabilities from a gender perspective because unfortunately such studies are very limited in our context.
Jyotishmita’s research is indeed an important attempt in the area of public health. It also tells us why it is imperative to focus more on public health and promote studies which are from an interdisciplinary framework. Hopefully the outcomes of more such researches will pressurise the authorities to approach the problem of disability in a more comprehensive and sensible manner. As Jyotishmita reminds us, “every health issue is a social issue”.
This is part of Student Struggle‘s new series on young Indian researchers and their areas of expertise.
Jyotishmita has submitted her PhD thesis at the Centre for Social Medicine and Community Health, Jawaharlal Nehru University (JNU). She can be reached at jyotishmita.sarma@gmail.com.
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