Rhythm is a bright, sensible 13-year-old, confined inside the body of an 18-year-old. More than often, he has been rejected or removed from mainstream schools because his mother dared to dream of his inclusion in the society/community of people his age.
The schools, however, do not agree or do not care. As a child going through Cerebral Palsy (CP), Rhythm rather stands out as someone his mother says, "a very sensible young boy".
And this phrase is not of a mother describing her son but a phrase describing a young boy's constant battle of never becoming a burden, to the people he loves, and especially to the people who have over and over shown that he does not belong.
Born premature, Rhythm was diagnosed with CP at the age of seven months that affected the rate at which his development took place both physically and mentally. But that did not stop his family or him, from looking forward to life.
The barrier, however, came from the schools where he could have been supported for his education instead of being termed as a "burden", or even "threat". A school, an educational institute, in my opinion, is responsible for teaching values such as empathy and inclusivity. But from the trauma that I have heard Rhythm and his family have gone through, I am not sure anymore if such values are even familiar in these institutions.
Certainly, Rhythm's case is not stand-alone in Bangladesh. We still seem to be the nation where parents have to think twice before disclosing their differently-abled child, where schools are more focused on segregating these children instead of ensuring the development of an inclusive society, and where media rather approves of entertainment content that calls such children as the "consequence of the parents' sins".
From my experience of learning about and working with Special Education Needs and Disabilities (Send) with Nisai Group, I have observed it to be a common practice, globally, where mainstream schools struggle or fail to uphold the value of inclusivity.
Imagine creating a world where we want to teach young people about empathy, inclusivity, and responsibility towards peers, but fail to practise it ourselves.
A current student of Nisai, 8 year old Max, although settled all the way in the UK, was going through breathlessness, lethargy, and exhaustion and when he mentioned it to his class teacher, received a response that everyone is always tired.
Max's family later figured out that he was actually suffering from Dilated CardioMyopathy (DCM), PTSD, and Acquired Dyslexia. This is when the family decided that traditional schools were not equipped to either diagnose or even support a differently abled, specially-abled, or even a child with certain medical conditions.
What makes it even more difficult for the children in Bangladesh is the lack of awareness among the mass population about the differences in the needs of each of these children. While speaking to organisations such as Bangladesh Therapy & Rehabilitation Foundation, and InnerCircle, we also got to learn that in the Southeast Asia region, it is estimated that every 1 in 160 children has Autism or autism spectrum disorder (ASD) - a group of neurodevelopmental disorders, which is characterised by the challenges of social behaviour, speech, language, and communication.
In early 2020, the Bangabandhu Sheikh Mujib Medical University (BSMMU) confirmed that almost 2 in 1000 children have been suffering from ASD in Bangladesh. Wherein, the urban prevalence is higher than in the rural areas.
According to an article "Epidemiology of cerebral palsy in Bangladesh: a population-based surveillance study," which was published in Developmental Medicine and Child Neurology dated in 2019, it has been studied that prevalence of cerebral palsy (CP) is 3.4 per 1000 children in rural Bangladesh, which indicates that there are an estimated 233,514 children with CP in Bangladesh as of 2018.
While we are aware that centres such as CRP are actively playing their part in supporting children with various physical conditions and ensuring the safe return to mainstream schools, it all comes down to how mainstream schools are truly acting as the bridge to inclusivity.
Learners with special education needs and disabilities have been given the short straw in education for too long. It has become clear that mainstream schooling does not suit all children. Other solutions such as special schools, alternative provisions and online schools are now required as one size does not fit all in education.
This does not mean that children with barriers to learning should be separated from their peer groups. Education providers should be able to provide learners with a safe, inclusive environment for their study – instead of isolating a student with "Send" or learning differences.
While Rhythm could not receive the support that his family had desired for him, his mother is still ensuring that he moves ahead with the education that her son deserves. Today Rhythm studies with the help of his home tutor and is already managing to start his classes for Grade 6. The playful person that Rhythm is, even whilst being in a wheelchair, he is also practicing cricket within the building where he resides.
On an ideal day, he would enjoy going to the park and strolling around and practice walking on crunches instead of having someone pull his wheelchair - but the fear that was instilled in him by the very education institutions which were supposed to encourage him, Rhythm will forever remain skeptic if the open fields and peers his age are options he can look forward to.
Sanjida Tanny works at Nisai Bangladesh
Disclaimer: The views and opinions expressed in this article are those of the authors and do not necessarily reflect the opinions and views of The Business Standard.