Debashis Sarker

Living with mutism in the socio-economic context of Bangladesh 

Abstract: 

This case study examines the experiences of a young man living with mutism in the socio-economic context of Bangladesh. This study found that a person with mutism is marginalized and discriminated against in all aspects of his life including access to basic services such as education and employment. Furthermore, it was found that this young man cannot express himself compared to others, is mostly excluded from social networks, has no access to credit for self-employment or experiences, and has limited access to justice. This study presents information on the socio-economic status of a person with mutism that will help society and state take the necessary measures to ensure social and economic empowerment of all people with disabilities.

Keywords: People with disabilities, People with mutism, Bangladesh, People who cannot speak, Parents experience  

Introduction:

According to the World Health Organization (2011), about 15 percent of the world’s population has some kind of disability. Most of the people with disabilities are living in the Global South and they are often deprived of access to their rights. In the frantic reality of poverty, they are fighting for their lives every day. 

This study was conducted in Bangladesh. Bangladesh is a developing country in South Asia with a population of more than 165 million (Asian Development Bank, 2018). Bangladesh Bureau of Statistics found that 6.94 percent of people in Bangladesh are living with a disability (Bangladesh Bureau of Statistics, 2016). Most of them are living under the poverty line and have limited opportunities to access basic services including government social safety net programs (Sarker, 2015). Many people in Bangladesh are not aware of the needs and capabilities of people with disabilities. Additionally, people with disabilities are often perceived as an outcome of “sin” committed in a past life. Moreover, they are treated as incapable of engaging in any activities. The Bangladesh Government introduced a disability act in 2013 but due to a lack of proper implementation, people with disabilities are yet to receive the benefits of that act. 

Among people with different kinds of disabilities, a person with mutism has to go through endless misery. The experience of a person with mutism has not been well documented in Bangladesh up to this point because very few research studies have been conducted on them. Therefore, the purpose of this case study is to document the issues a person with mutism faces in his everyday life, as described by his parents. 

Research Method: 

For collecting data, I developed a partnership with a local Non-Governmental Organization (NGO) named Thengamara Mohila Sabuj Sangho (TMSS) that works for women’s empowerment through multiple development programs such as financial inclusion, education, and health. In collaboration with TMSS, I conducted a semi-structured in-depth interview in a rural area of Bogra district with the parents of a son with mutism. Since the participant could not speak and it was difficult to manage a sign language interpreter, I had to interview the parents of the participant. However, before the interview I shared with the participant the purpose of my research, confidentiality of information, voluntary nature of participation, and opportunity to withdraw from participation at any time during the interview. After getting consent from the participant, the interview was recorded through mobile devices, and subsequently transcribed. Finally, I conducted a thematic analysis by following the six steps processes shown by Braun and Clarke (2006). This study developed five themes: talented and caring son, family and social life, education and health, access to justice, and access to credit.

Findings: 

1. Talented and caring son

Bikash (pseudonym) is an 18 year old male person with mutism. He is living with his sharecropper parents and his only younger brother. He loves to eat big fish, and meat. Bikash asked his father several times for some money to buy something he likes from the market, but the poor father became upset when he could not give him money. He is a very talented person, and he never forgets once he sees something. For example, his mother recently received a sewing machine as a grant from an NGO. Watching his mother working with the sewing machine for two days, Bikash also learned how to work the machine. Now he can sew clothes by himself. Bikash has a very caring mind. One day, his father was very ill with fever. He could not sleep at night. Bikash did not sleep that night either and always took care of his father. Bikash’s father explained that he knows his son’s mind is still full of happiness and pride because of the care that Bikash has shown to him. Bikash loves cows very much. He has a desire to buy a baby cow, rear it, and sell milk in the market in the future.

2. Family and social life

Bikash lives in a very small house with his parents and brother. On rainy days, water goes inside the house and wets the bed and other items, but due to poverty, the family cannot spend money to fix the leaks. Sometimes they cannot eat three meals in a day. Since Bikash cannot speak, he cannot spend time naturally with other people in society. Local people do not give him due respect or importance. If someone speaks in sign language, he can communicate. However, there is no one in his village who can speak in sign language. Therefore, most of the times he stays alone. To describe his situation, Bikash’s mother explained: 

“He (Bikash) has to face several challenges. He cannot communicate with other people. That is the reason he does not have contact with people in the society. People think that my son cannot do anything. How could a person live like this? I do not think my son is disabled rather the society is disabled. I always ask support to God. I believe God will take care of my son.”

3. Education and health

Generally, people with disabilities have less access to education, especially in rural areas (WHO, 2011). If someone has mutism then the chances of an education are almost zero. Bikash’s parents tried to educate their son. They went to enroll him in a local school but the school teacher did not admit their son. Bikash’s father shared this story with broken heart: 

“When I went to enroll my son in a primary school, one teacher told me that how could teachers teach a boy with mutism. Then I told the teacher to teach in sign language but the teacher did not agree. I further told the teacher that the government has given them the responsibility to teach children. It is my job to send my son to school. However, the teacher disagreed to teach a child with mutism. Then I did not understand what to do. I could not afford to send my son to city to educate. This is how I lost hope.  Since I had to manage food for my family, I started working hard. I could not think much about my son’s education.” 

People with disabilities do not get health care services very easily. Government hospitals are supposed to provide free treatment for people with disabilities but people with disabilities do not get that. In many cases, people with disabilities treated with such a lack of respect in the hospital that they do not dare to go there. Moreover, in rural areas government hospitals are not available. When Bikash was young, a doctor told his father that Bikash would never be able to speak. However, Bikash’s father did not give up. He visited many doctors but nothing worked. 

4. Access to justice

Bikash does not get proper justice in society. The reason is that if someone treats him badly, it is difficult for him to prove it verbally. In a case where two people were quarrelling with each other in the village, Bikash tried to make them calm. Later, he told his father that while he was trying to stop their quarrel, they physically humiliated him. However, since Bikash could not speak, his father could not identify those people who had insulted his son. Therefore, his father says due to his son’s inability to speak, his son does not get proper justice. 

5. Access to credit 

Bikash always wanted to do something by himself. Now he is eager to buy a baby cow. He would like to rear that cow for a few years and then sell the cow’s milk in the market. As Bikash’s parents do not have the financial capacity to fulfill that desire, the alternative is to borrow some money from credit providers. However, it is challenging for people with disabilities to access credit from NGO’s, microfinance institutions (Sarker, 2013; Sarker, 2020), or banks, particularly for a person who has mutism. This is because lenders have a negative perception of people with disabilities, and wonder how they will use the money and repay the debt. They perceive people with disabilities as risky customers. Bikash’s father said that he tried to get credit for Bikash but failed. He explained with frustration: 

“Usually credit is not given to a person with disability. A person with disability who has no parents might not get credit even though the person with disability has the ability to use credit productively and repay on time. If my wife and I die, will there be anyone who will give credit to my son? Certainly not.” 

Conclusion:

This article presented how a person with mutism became isolated in society and how this isolation will lead to him being vulnerable in the future. It also documents his experience of an inability to access basic services and human rights, continuous deprivation, neglect, and discrimination. Writing and articulating the experiences of a person who has mutism is challenging because just a few hours of discussion does not allow the researcher to capture all the experiences of a person with disability. The unheard voice of a person with mutism from the parent’s experiences might not be fully representative, but does help to fill the gaps in the existing literature, especially in the context of a country like Bangladesh. This research suggests that people should be culturally aware of the needs of a person with mutism. Family and society should both be empathetic to people who have mutism. Government, policy makers and human rights activists should communicate the potential of people with mutism to participate in society. To protect and empower people with mutism, particularly in Bangladesh, the first thing that needs to be done is to find people with mutism. Data on the number of people with mutism and the location where they live is important to help design customized socio-economic programs such as health and education services, capacity development, and financial inclusion projects for the empowerment of people with mutism. Moreover, more in-depth research needs to be conducted on people with mutism, and the findings of that research should be incorporated in the policy development process so that the voice of people with mutism is reflected in the policies. To achieve the United Nations Sustainable Development Goals 2030, everyone must come forward to address the challenges that people who have mutism experience in their daily lives. 

References:  

1. Asian Development Bank. (2018). Bangladesh: By the numbers, retrieved from https://data.adb.org/dashboard/bangladesh-numbers
2. Braun, V. & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77-101. doi.org/10.1191/1478088706qp063oa
3. Bangladesh Bureau of Statistics. (2016). Household Income and Expenditure Survey (HIES) preliminary Report, retrieved from  http://www.bbs.gov.bd 
4. Sarker, D. (2020). Discrimination against people with disabilities in accessing microfinance. Alter, 14(4), 318-328. https://doi.org/10.1016/j.alter.2020.06.005
5. Sarker, D. (2015). Inclusion of disabled people in microfinance institutions: Where does Bangladesh stand?. International Journal of Innovation and Economic Development, 1(1),67-79.https://doi.org/10.18775/ijied.1849-7551-7020.2015.11.2007
6. Sarker, D. (2013). Microfinance for disabled people: How is it contributing. Research Journal of Finance and Accounting, 4(9), 118-125.
7. WHO/World Bank. (2011). World Report on Disability, WHO Press, Geneva, Switzerland

Acknowledgement: The author of this article is an Australian Government Research Training Program (RTP) scholarship recipient.

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About the Author:

Debashis Sarker is a PhD Candidate at the School of Social Science, The University of Queensland, Australia. His research interests include social and economic empowerment of people with disabilities, poverty, financial inclusion, and microfinance. He has been working for many years in different organisations including research, business, non-governmental organisations, investment fund, and FinTech organisations in different countries including Bangladesh, Belgium, Germany and Australia. He can be reached at: d.sarker@uq.net.au