Aless McCann (Project Intern)
Featured researcher: Dr Masauso Chirwa, University of Zambia
Dr Masauso Chirwa is the Programme Coordinator for PhD and Masters programmes in the Department of Social Work and Sociology at the University of Zambia. He holds a PhD from Warwick University and his doctoral thesis examined the experiences of mothers of disabled children in Zambia. His interest in disability research dates back to 2009.
Dr Chirwa has published widely on disability and is a member of several international Think Tanks including the International Association for Scientific Study of Intellectual and Developmental Disabilities (IASSIDD). Currently he is working on several projects including evaluating support services for disabled students and staff in public and private universities in Zimbabwe, Zambia and South Africa, funded by the Council for the Development of Social Science Research in Africa. Another study, funded by the Irish Government, brings together a global partnership of academics to examine the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers. Dr Chirwa also leads on a project researching disabilities and embodiment in Namibia with a focus on religious and cultural perspectives, in partnership with the University of Namibia, and funded by the UK’s Global Challenges Research Fund.
His doctoral research on the experiences of mothers of disabled children in Zambia took place in both urban and rural settings to give a holistic picture of maternal experiences. Ideas from the Social Model of Disability helped him understand how disability is perceived in Zambian culture. The study used the lens of Intersectionality Theory, which asserts that people are often hindered by multiple sources of oppression, to assess how different identities of the mothers participating in the study overlap and cause disadvantage. It examined the impact having a disabled child had on a mother’s ability to remain in employment, engage in social activities and their perception within social networks.
The study’s findings show that the impact of having a disabled child depended on whether the child was first born or had older siblings. Mothers with older children were better able to cope and adapt to having a disabled child, they were accepted by their spouse and wider family and the disabled child’s siblings were able to assist with their care. First time mothers, on the other hand, struggled and were blamed for the child’s impairment; they were often cast out by their inlaws or wider social networks and many were divorced by their spouses. This blame was often internalised and led to biographical disruption, defined by Mike Bury as the way illness interrupts ‘the expectations and plans that individuals hold for the future’, requiring ‘a fundamental rethinking of the person’s biography and self-concept’ (Bury 1982:169). Although in this case the disruption is transferred from the child to their mother. Divorce was more common for mothers in rural settings than urban ones after the birth of a disabled child. In the countryside husbands sometimes took on a second wife leading to a polyamorous marriage; this was not reported in towns or cities. Across the rural/urban divide it was common for first time mothers to face seclusion or banishment from mainstream society following the birth of a disabled child.
One of the challenges of his work, Dr Chirwa says, is the reluctance of participants in Zambia to engage in studies because they had been the subject of research so many times before. Participants often live in abject poverty but saw no positive changes to their lives following research projects. They therefore became reluctant to engage with further studies since disclosing personal stories bought no benefit to their communities. Dr Chirwa overcame this challenge by compensating participants for their time and travel costs with sugar, salt and cooking oil. However, he was realistic in his remunerations to avoid causing difficulties for future researchers who could not compensate participants to the same extent.
To overcome other challenges surrounding engagement Dr Chirwa endeavoured to approach participants on their level rather than from the elevated social height of an academic researcher; sharing a common language with them helped. He also made sure he was aware of current issues within the community to find commonality with participants. He respected local traditions but refined them where appropriate to assist with the study, for example local culture dictates that if a man is present and there is only one chair the man sits on it, Dr Chirwa however, sat on a mat with participants whilst interviewing them to remove hierarchy and foster a sense of equality. When interviewing women, he also ensured he was accompanied by a colleague to avoid social awkwardness or any suspicion of impropriety. Dr Chirwa asked simple questions at the start of the interview to get the conversation flowing and then, as trust built, he asked more probing questions. He found this approach worked well; participants wanted their story to be heard providing the environment was conducive for expression.
Dr Chirwa notes that it is important to understand the context you are studying; disability is perceived differently in the Global North compared to the Global South. Northern researchers working in the South need to adapt and not rely solely on theories created in the North as not all of them will be applicable. One must understand the indigenous perspectives of disability in the South and look to marry in the arguably more enlightened approach prevalent in the North. In the South disability is not socially constructed. In rural areas of Africa disabilities, particularly intellectual ones, are viewed as punishment from God or spirits for a woman’s crimes such as infidelity during pregnancy, eating foods advised against whilst pregnant or falling out with in-laws. In urban settings there is a more enlightened approach; it is understood that some conditions are genetic, for example. Yet, even in these areas, the medical model view of disability prevails. Dr Chirwa encourages researchers at the start of their career to read widely to familiarise themselves with their subject. When working in the Global South he recommends that researchers familiarise themselves with the field and don’t assume the situation on the ground will be exactly as they’ve read. He says paying attention to participant’s body language is important, and so is awareness of cultural sensitivities such as a man not interviewing a woman alone. Dr Chirwa is involved in a number of research projects concurrently and has many demands on his time, but his interest drives him. He says, “when you love what you are doing, it doesn’t feel like you are busy and you want to take on as much as you can!”