Research Institutions to Scale-Up Inclusive Research For Youth with Disabilities

By Sadique Bamwita




Three research institutions including the Uganda Virus Research Institute/Medical Research Council, London school of Hygiene and Tropical medicine in partnership with Makerere University, have pledged to scale up inclusive research for youth with disabilities.


The Heads of these research institutions argue that building capacities of youth with disabilities to participate in research adds value to research studies and science.


Dr. Herbert Muyinda, the head of the Department of Child Health and Development Center at Makerere University, says involving young persons with disabilities in research will help to change the stereotypes associated with disabled persons and would also contribute to affirmative action.


He said this is evident after sixteen youth with disabilities successfully conducted a pilot research project on fellow disabled persons and their study yielded positive results.


‘There has been limited research on youth with disabilities and to include them in their own research enables them to increase the quality of research. We need to change the narrative that people with disabilities can’t conduct research studies or perform particular things. This is because disabled persons can be nurtured and molded into good researchers if they are given the appropriate skills and technology,” he said.


‘We are working hard to ensure disabled persons can engage in productive research that can be impactful to others. To achieve, we need to engage different stakeholders both at national and local government level. We intend to engage local governments so that they include a budget for disability activities, ‘Dr. Muyinda pledged.


On the issue of children with disabilities in rural areas Dr. Muyinda said:


‘We have discovered that children with disabilities living in rural areas face a lot of challenges and in most cases are neglected by their parents or the community. The community thinks that they can’t do anything hence ignoring them by not investing in them.


“Another big challenge they face is the issue of infrastructure accessibility. Most UPE schools in rural areas are designed in a way that can’t accommodate children with disabilities, for example the toilet facilities can’t be accessed by disabled persons and to make matters worse, the classroom verandas  are huge and very narrow. Therefore, infrastructures make it hard for the disabled children to access education.


“We also need to train teachers to learn skills of teaching disabled children or children with special needs.  For instance a teacher must have the skill of teaching children with hearing impairment but majority of them lack it hence making it difficult for such children to access education.


“I believe to address all these challenges; there must be good government policies in place to implement the Disability policy as provided in our constitution. However, there is a gap in implementing policies by policy implementers thus affecting people with disabilities.


The Principal Investigator of the study and also Head of Disability Research at the Uganda Virus Research Institute, Dr. Femke Bannink Mbazzi, explained that the study not only built capacities of youth with disabilities but also enabled fellow disabled persons to feel cared for and consequently were able to air out the challenges they face.


“The study enabled the youth with disabilities to engage others in addition to encouraging participation of youth with disabilities.  In some communities people think disability can be transferred while in some schools some students don’t want to share cups or plates with fellow students with disabilities, ‘Dr. Femke expressed concern.


The Director of the Medical Research Council, Prof. Moffat Nyirenda, said the pilot study conducted by youth with disabilities signifies the need to increase their representation in research and academia.


“We need to empower disabled people to be able to advance their research. The research they undertook gave them an opportunity to participate in research and in future they will be good researchers,’ Prof. Moffat noted.


The Executive secretary for National council of persons with disabilities, Mrs. Lillian Namukasa, asserts that inclusion of youth with disabilities in research will greatly help to break the barrier of using them as a subject for research.


‘Previously researchers have been using people with disabilities as a subject for research. They would collect data from them to inform research studies but with inclusion of people with disabilities to carry out their own research is a step forward in changing the narrative that they can’t do their own research. This time round we gave the opportunity to a team of young researchers with disabilities of around 12 people to do research rather than being research objects. They conducted their research independently and wrote their own research report. This was intended to build their capacities so that they are able to do their own research.


“We are currently short of research concerning people with disabilities. So we are building a group of researchers who will in future be impactful when conducting research on their fellow disabled persons. Their research findings would help to get information that is useful for planning, programming and budgeting.  When we build capacities of people with disabilities, this enables them to get jobs in research institutions and other agencies. They will also be future researchers who will employ themselves and also employ others, especially fellow disabled persons,’ Mrs. Namukasa expressed hope.


Betty Akwii, a researcher with albinism at the Medical Research Council in Entebbe, explained that the study enabled disabled youth to engage with their peers freely in addition to increasing participation of youth with disabilities.


“By involving the youth with disabilities in research, they got inspired and wondered if they can also become good researchers. The disabled persons were able to disclose a lot when we interviewed them. I encourage other research institutions to emulate Uganda Virus Research Institute and Makerere University by involving the youth with disabilities do their own research.’


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