‘That’s my journey’: what motivated me to conduct disability research?

Abstract

The following is a short article about what motivates me to conduct my PhD research on disabled people and their livelihoods in Sri Lanka. In my PhD, I included disabled people to formulate my research aim and objectives. Involving disabled individuals in the research process ensures that the most pressing concerns are addressed, hence enhancing the quality of the research.

Keywords:

• Disability
• entrepreneurship
• inclusive research
• leprosy

Am I going to die? ‘Can I be cured?’, ‘Will I be able to live a normal life?’, ‘Can I be close to my parents, my husband, and my brothers?’ ‘Will I be able to have kids?’ ‘Am I ill? Do I have any rights?’

These were some of the questions that came to my mind when I was diagnosed with Leprosy, the disease that left me with an impairment. I did not begin my professional career with any interest in disability. I was not even aware of the depth of disability studies that had been conducted all around the world. My bachelor’s degree, which I completed at Cardiff Metropolitan University in 2013, was focused on Business Studies. My master’s degree, which I completed at the University of the West of Scotland in 2016, was in Finance and Accounting.

I was not born with an impairment. I acquired an impairment later in my life. One thing I realised after my incident is that I am disabled not because of my impairment but because of the way people treat me because of my impairment. I do not have a disability. I have an impairment. I am a person who has experienced leprosy. I am still affected because of how people treat me. I strongly acknowledge that I am disabled because of all the negative attitudes that I am experiencing. It took me 9 years to talk about what I went through. Whenever I think about it, it makes me feel very nervous and afraid. I was more worried about my family than about myself. My husband and I moved to the UK in 2010 for my higher studies. Unfortunately, a few months after I arrived in the UK, I became ill and had to go back home for treatment and over there I was diagnosed with leprosy. I’ll never forget the moment when I found out I had this disease, and my life underwent a complete change. Up until that moment of diagnosis, I was living a life full of dreams, I was so young, newly married and had a great husband. I was looking forward to the new life in the UK. I was full of confidence. However, the moment when I found out I had this disease, my life completely changed. My left hand got badly injured as a result of the disease. I was shocked when my doctor informed me about this diagnosis. The first thought that occurred to me were movie images of people covered in dull clothes missing fingers, toes, limbs and other body parts. I stigmatised myself. I felt unsafe without the least self-confidence. I was afraid that society would exclude me. I was scared that if others would find out, my family would be shunned or would be classified as lower in the social hierarchies. More sadness came when I experienced doctors’ discrimination because of the disease. The doctor who treated me in my home country was so rude to me. The first thing they asked me was ‘how did you get this disease?’. They accused me of being a promiscuous person. I was profoundly depressed and was shamed, worried and scared to live with leprosy. I never thought I would ever grow up to have a normal life. I experienced triple discrimination due to my gender, impairment, and stigma associated with the disease. Doctors in the UK and Sri Lanka have determined that the muscles and nerves in my left hand are damaged, and it is irreversible.

As time goes by, I realised that, if I can’t change a situation or an outcome then the best option is to learn how to accept it and make the best out of it. So, I didn’t give up. Full of hope, I went to Sri Lanka after my master’s degree hoping to find a good job. Unfortunately, life was not as easy as I expected. I struggled to find a job. I sought help from friends and relatives. I remember someone I knew asked me how I was going to do a job with my disability. He asked, ‘Who would give you a job when they can hire a non-disabled person?’ I felt ashamed. The only option I had was to start my own business. If someone with a strong educational background, like myself, struggled to find a decent job, I was wondering how hard it must be for other persons who have a lower level of education to feel included in mainstream society.

My experience after I acquired my impairment changed my perspective on life. I was introduced to a world that I’d never properly thought about before – the world of disability. I began to see what a disabled people’s world was like. My personal experienced opened my eyes to be focused in barriers in society rather than the individuals. People often asked me the question, ‘Who cares about these people, when people who are non-disabled in developing countries also suffering?’ I realised that many people do not understand the day-to-day struggle that disabled people go through. The stigma and discrimination they experience. Society often forgets that disabled people have dreams and hopes just like everyone else in society. In theory, at least, there are many rules and regulation that protects disabled people, and many believe that the world is becoming more disability friendly. Unfortunately, the reality is starkly different.

When disabled people lose their livelihood, there can be the severe financial implication. This undermines self-esteem and leaves them unable to support their family. The stigma and discrimination forced thousands of disabled people deeper into poverty and they are forced to beg for survival due to a lack of support. This is still the truth in Sri Lanka. When I stayed in Sri Lanka in 2017, I have seen it with my own eyes. During my one-year stay in Sri Lanka in 2017, I travelled all over the country and I often wondered what the use of all the disability policies in Sri Lanka. When I discussed these with a few government officials back home, they all told me that there are many policies in place and there are many things that the government has done to enhance the wellbeing of disabled people. Government officials think that developing policy is all they need to do. People whom I spoke to did not feel they are included in our society.

The United Nations Convention on the Rights of Persons with Disabilities (UNCRPD’s) Article 27 emphasises the rights of disabled individuals to inclusive employment and work environments. The Sri Lankan government signed the UNCRPD on March 30, 2007, and ratified it on February 8, 2016, almost a decade later. The UNCRPD aims to make workplaces open, inclusive, and accessible by outlawing discrimination at all phases of employment, from recruiting to career development to salary setting and encouraging accessibility to reasonable adjustments where necessary. With these changes, disabled people can be employed to support their families and contribute to the development and expansion of the national economy. The question is, has it been implemented in developing countries? Some of the disabled people whom I met through government organisations in Sri Lanka were even scared to declare the truth of their struggles. Their struggles for basic education, employment, benefits, and rights. They were worried that if they told me the truth it would affect their whole families. One of my participants from Sri Lanka told me (in Sinhalese) Mewa Kianna gihilla hambuwena sochchamath nathiwei means If I told I will lose the little I received.

During my travels, I met many disabled people from different parts of the country. Most disabled people that I met were self-employers. I wondered why they all are self-employers. Why are they not engaged in regular employment? Why is it so difficult for them to find jobs? Was it because of the lack of education? I often wondered how come they lack education when the country is providing free education for any child aged 5 or above. What was the reason behind this? I was very curious to find out the answers to all those questions that popped into my mind. I was interested in identifying the experiences of disabled entrepreneurs, and understanding what it means to be disabled by society, what challenges they faced over time, and how their past experiences impact their current lives. I began my search for an opportunity to research disabled entrepreneurs, which would add something valuable to the disability and entrepreneurship/self-employment research and would acknowledge the disabled self-employers who had businesses and were continuing their business. One of the core objectives of my research is to ensure that my research is ‘inclusive’. I want to make sure that my research will benefit disabled people. I don’t want to do the research just for the sake of getting a degree. I want to explore an issue that has stemmed from participants themselves.

Why have I involved disabled people to formulate my research focus?

As a person with an impairment myself doing research with other persons with impairment, I am, both ‘inside’ the culture and participating in that which I am observing. In other words, my research is as much about my own experiences as it is about others. The failure of social research on disability to concentrate on the topics that matter most to disabled people has been emphasised by academics in the field of disability (Barnes, 2003).

During my travels in 2017, one of the persons whom I initially had conversations with me mentioned that ‘people like you come and ask questions from us and that’s it. They asked what kind of difficulties we experienced, how people react to our disabilities, what kind of support we received, do we get any support from the government so on and then they leave. Nothing good happens to us. I do not see any improvements, every day we are going backwards. Is that what you called research?’ I was speechless. I wanted to do something that would benefit people. I wanted to do something that would transform their lives. Research could alienate disabled research participants if disabled individuals are not included in studies relevant to their experiences or if research findings are not communicated in an accessible manner. In my study, I involved disabled people in the process of prioritising research topics before finalising the research objectives and methods. As a result, they helped me choose a topic for my research, formulate research objectives, to choose a method and even help me finalise interview themes. They even agreed to get involved throughout my data collection process. I plan to provide them with formal training sessions before the data collection. They further advised me that I must disseminate their stories/struggles and the stories of stigma and discrimination they experienced in Sri Lankan local newspapers. Including disabled people in my project at the early stage of my research aided me to develop research questions and choose a topic for my study, by referring to the first-hand experience of disabled individuals.

Ensuring that research addresses the most urgent issues faced, including disabled people in the process can improve the quality of the research. We must learn how to establish a research culture that incorporates disabled people, rather than excluding them, if we are to do inclusive research. The emphasis should be on working with disabled people, who are experts by experience, to shift the balance of power away from the researcher and give those with first-hand knowledge, or who are knowledgeable via experiences, an authentic voice in directing the study process. As a person who has experienced stigma and discrimination and acquired impairment due to disease and disabled due to a disability-phobic society, we must ensure that research is inclusive and have an impact on our community and our countries.