As a student member of the Justice, Equity, Diversity, and Inclusion (JEDI) committee, I have participated in discussions about diversity in identity and making everyone feel included. However, we have yet to address the extraordinary challenges faced by students battling rare diseases. It has become apparent to me that many schools have not considered how to accommodate students with rare diseases, nor have they looked into training teachers to support students with rare diseases in classrooms. Although rare diseases may affect a small number of the population individually, collectively they would form the world's third largest country. Over 70 percent of rare diseases begin in childhood, which means a substantial number of children and students are living with these conditions (NHS). Globally, around 30 million children are estimated to have a rare disease (NHS). This brings up an important question about where we stand in terms of diversity and inclusion. How can we bridge this gap?
The students facing unique challenges often have intersecting aspects of diversity and inclusion. For instance, a student with a rare autoimmune disorder may not only struggle with frequent absences due to medical appointments but may also face bullying or exclusion from peers who do not understand their condition. The combination of medical challenges and social isolation can severely impact their academic performance and mental wellbeing. Despite these challenges, the quality of education for students who battle rare diseases is depleted. This is a great challenge not only for the students but also for the academic institutions.
Inclusive education should consider the unique challenges faced by students with rare diseases, requiring specialized knowledge from educators. The United Nations Educational, Scientific, and Cultural Organization (UNESCO) highlights the importance of providing high-quality education full participation in society. However, over 70 percent of teachers feel unprepared to address the needs of these students due to a lack of training and resources (Rosselló et al., 2018). Resources like Rare Disease Day toolkits can enhance educators' preparedness to address these challenges. In addition, it is worth considering learning about specific rare diseases the student battles because rare diseases are diverse, each having its own set of challenges. Then, educators would be better prepared and provide higher-quality education.
Furthermore, several difficulties are associated with including students with rare diseases in the classroom that go beyond the medical elements of the illnesses. These difficulties include the requirement for customized educational strategies, specialized support networks, and a thorough comprehension of the psychological effects on students and their families. For this to happen, schools must invest in individualized education plans (IEPs) that address both their academic needs and their health-related challenges. Through these plans, educators would be more prepared and confident in teaching students with rare diseases.
An important misconception that should be addressed is the belief that rare diseases are considered a disability. Students with rare diseases are not disabled; rather, they have a condition that makes them more vulnerable due to the nature of the disease they have. They are human and require specialized treatments in school so that they can learn and maintain good health. It's crucial for other students not to isolate students with rare diseases, but instead to befriend them, play together, and stay united. Other students need to learn about rare diseases and understand that students with rare diseases are not aliens, but students just like them.
It's important to remember that inclusion is more than just making everyone feel accepted; it's about creating an environment where everyone is happy to be a part of it. It's not just about raising awareness of these illnesses, but also about creating a positive school culture that allows these students to enjoy the same experience as any other student. Being inclusive is important, but creating an environment that supports inclusion is equally important. As today's leaders, we have a responsibility to make this a priority.
Educators, policymakers, and community members alike share the responsibility to ensure that students with rare diseases are not left behind. Schools should advocate for the inclusion of these students in their diversity and inclusion policies, invest in specialized training for teachers, and work together to create a school culture where every student feels valued and supported. Schools need to act now to make inclusion a reality for all.
Watch my TEDx presentation about How To Become a Rare Disease Advocate.
References
Rosselló, M. R., Verger, S., Negre, F., & Lourido, B.P. (2018). Interdisciplinary care for children with rare diseases. Nursing &Care Open Access Journal, 5(1). https://doi.org/10.15406/ncoaj.2018.05.00110
NHS choices. https://www.eastgenomics.nhs.uk/about-us/news-and-events/rare-disease-day-2024/.
Hadee Panjwani was born and raised in Tanzania and is a recent international school graduate. During his secondary school years, he held various leadership positions, including student council president and co-chair of the Justice, Equity, Diversity, and Inclusion committee.
