Every day, individuals all over the world – some marginalized by ethnic identity or immigration status, others by geographic isolation or lack of material resources – fall through the cracks in healthcare systems. How do we make progress in these high-needs, low-access spaces, and what can we learn by bringing together experts from across the healthcare landscape? How do health practitioners serving seldom-engaged patients get the job done? How do researchers create the evidence needed to support that difficult work?
As part of the Reaching the Rarely Reached series, On the Ground’s Mackenzie Whipps asked three NYU practitioner-researchers how and why they conduct research with populations that are often forgotten with in the healthcare system. Each expert targets a different social problem, and each uses novel strategies to better serve the communities they work with. The next two Q&As will be available in May 2019.
As an occupational therapist, Dr. Janet Njelesani has spent many years working primarily with children with disabilities in low- and middle-income countries. In these contexts, schools are often under-resourced to meet the complex needs of their disabled students. Many of these children leave school altogether, and are left further marginalized, facing steep uphill battles to access needed services and education. In her newest project, Dr. Njelesani is testing the use of “low tech” strategies – like traditional games and oral storytelling – to integrate students with disabilities into school environments and reduce school violence in Zambia.
As an Occupational Therapist, what do you see as the largest barrier to engaging with children with disabilities in low- and middle-income countries?
In the contexts that I work, many of the schools are not ready to accommodate children with disabilities and ensure their participation in school, so many children with disabilities are out of school. If children with disabilities are out of school, they may be hidden at home or sent to institutions leading to greater social exclusion from their communities.
The research I am carrying out on school violence against students with disabilities has shone a lens on some of these issues. I’ve heard from families who were very concerned that now that their child is going to a mainstream school, the child is experiencing a great deal of violence at school due to the stigma of disability. This issue of school violence is not something that policy-makers are not talking about or preparing for, they are solely focused on the physical barriers in schools.
The message that I advocate for is that including persons with disabilities should be thoughtfully done in all research, policy, and programming. Often disability isn’t considered, even though it’s one of the most significant vulnerabilities – having a disability makes you at risk for not being in school, increases the risk of violence, poor health, and poverty. Persons with disabilities have a right to be involved in research and the right to access innovative interventions that are occurring. By expanding the accessibility of our research methods and program tools, we will increase participation for people with and without disabilities.
Technology can play a big role in new intervention strategies, and lots of funders want to see the latest in technology being used. Why did you decide to rely on traditional games for the communities you work with instead of using a technology-based approach?
When I create my intervention methods, I co-create it with youth with disabilities who live in Zambia. So, it’s really from them, listening to them in terms of what are they are interested in, what is going to be their means of communication. It’s a place where not every youth has a cell phone, especially youth with disabilities in families with financial hardships. So, it’s really been about what is the most part of the day-to-day of the youth that I’m working with. I’m also collaborating with other researchers who use other mediums, like visual arts and music, to do this work better.
What state, national, or international policies do you wish we could see in the next 10-20 years that would better serve marginalized children with disabilities?
If the United States were to ratify the UN Convention on the Rights of Persons with Disabilities (CRPD), that would be a monumental step for the disability community as the US is one of only two countries in the world that hasn’t ratified the UN CRPD. Also, a shift is needed to including children and youth with disabilities in research and making policy and program decisions that affect them most.
Mackenzie Whipps is a 5th year doctoral student in the Psychology and Social Intervention program in the department of Applied Psychology.