A one-sided deal

Wapendwa Debriefers, 

I’m writing to you anonymously from Tanzania, choosing Nyuki Msimulizi as my pseudonym. In Kiswahili Nyuki means “bee”, and Msimulizi means “storyteller”.

Writing anonymously gives me the courage to share some realities of my lived experiences, and also the professional freedom to share stories of student experiences from my work as a teacher for students with special educational needs.

In exploring education, I carry with me my own self-diagnosed neurodiversity and a host of mental health diagnoses. Alongside them, I bring a Western education in Special Education. This short introduction gives me a chance to fight my imposter syndrome, as I qualify in the “Nothing about us, without us” movement, and the academic box of “she should know this”.

But as I learn about education and turn pages of scholarly articles, I feel quite distant from their realities. I want to share my experiences in schools here and what inclusion means to me. Real inclusion in schools is not a tick-box or an administrative practice. There’s a feeling of belongingness that is ever so distinct for the person experiencing it. 

Original writing like this is made possible by support from readers. Thanks again to K. Li whose incredibly generous contributions are a pillar in doing this work.

“God will reward you”

Within Tanzanian education systems, we have some schools classified as “inclusive”, where learners with and without disabilities are educated together. And we have special education schools/centers, where learners with certain disabilities are educated separately.

In general, our education systems are struggling with high student-to-teacher ratios, lack of teachers, lack of infrastructures, lack of classes and schools. The teachers have attended professional development trainings on inclusion which are always a mismatch with their realities.

I work in a private special education school. It primarily supports learners with intellectual and developmental disabilities. While this specific category has yet to be coined in Kiswahili, currently many different names are used for our learners, some are medical and others are just hurtful.

My colleagues are passionate and driven. We pull through, even if classrooms have become crowded like matchboxes. We pull through despite the uncertainty of where all our efforts will lead our students. Whenever we ask for fairer compensation we are told “Mungu atakulipa”, God will reward you.

Not far away from us are autistic and special needs centres run by the government. They usually have one large room. It serves as an all-purpose area – classroom, kitchen, dining room – for approximately 80 students and 2 teachers. For many teachers their primary job is minimizing damage and “baby sitting” the students.

“I don’t know”

Let's take a few steps back to my own schooling experiences. I had an education with same-aged peers, yet there was always a vague feeling of knowing my internal reality was so different, extreme and gut-wrenching in ways no one else could realize.

I remember being the child who cried a lot to get into new classes. I was one of the most obedient students yet I had lapses during exam situations and I became one of the few students who left secondary school halfway through, finishing my education at home.

I didn’t understand it. It baffled me that I was such a good kid yet every time I learned that a new “strict” teacher was going to teach us, I couldn’t sleep, and I refused to go back to school. Every time we had tests, I learned the material like a nursery rhyme, yet I would drive myself into tumbo joto, a hot stomach.

On paper I met the requirements of a good education. I had a space in a mainstream school, friends, academic opportunity and glorified international curriculums. But being in that space dictated how much of myself I was allowed to express.

I was trained to take minimal space, to shrink my personality, to calm my busy hands, and to keep my intense thoughts at bay. I learned to ignore my body’s warning signs, incessant crying after school, getting sick during tests. My heart was never calm and my mind did not speak kindly to me.

Until one day during my final year mock exams. My body and mind went into a crisis mode. I refused to return to school or pass the streets where my school was located. My parents saw a girl who would jump out of a moving car if we went near the school.

I saw a girl who had turned into a recluse overnight. But it was totally unclear as to why. The only answer I had to give myself was “I don’t know”. 

A space where I could show myself

Almost two decades later, I was looking for a research job but it turned out the only open position was at a school for students with intellectual and developmental disabilities.

My body’s natural response to transitions is to worry, to feel like I would never succeed in this new role, to tell myself that I would be taking this school down with myself. But within the first week at the school I sensed a shift in my internal regulation.

I had found a safe space where I could be my quirky self, fidget freely and happily, move around without looks of wonder. This was new for me, to be in a space where I could show myself. Colleagues joked that I had been influenced by our students.

For me, my strong connection with students did not always require communication. And it did not require a mask of camouflaging parts of my identity to fit in. Students learned to give me breaks and I was not shamed for preferring to have a routine for my work outfits, the students loved the sameness and enjoyed it!

It is also here that I learned that my glorified education in Western Universities did not match the realities of my students and their environment.  

“That’s not how we behave”

Early in my teaching journey, I met Rahim (not his real name) and other students who seemed like they would benefit from mainstream education. They had academic potential, minimal movements, used the toilet independently and were not aggressive (the informal checklist for inclusion in mainstream education).

With my expert “book” knowledge, we pioneered a program to include them in a primary school. The very first days at the school almost felt like a zoo. Admin visited us, went “awwww” and even offered us sweets and fancy foods. Other students stared or kept clear, almost afraid.

But then, strangely, some students from the mainstream setting started spending their breaks with us, more comfortable, and when asked why, they – like me when I was a girl – responded “I don’t know”.

Rahim, was one of the first few students who was able to join the mainstream classes. The joy of the parents in seeing their son outside the special-educational needs setting and my pride in saying we introduced inclusion at the primary school was unparalleled. But then came some heart-breaking realizations.

Rahim was a boy who lived in the world of his favourite characters, playing with his hands, making them jump, fight and smile. None of us knew the plot but we saw it intensify with his expressions. He had loud expressions, and intense physical movements.

Within the first month in the mainstream class this form of expression was stripped away from him. He told us “that’s not how we behave”. His joy had turned into what singled him out. When I passed by the windows of his classroom I saw a different boy, one that sat quietly, his body curved almost like a C, all the space he took in our class morphed into being glued to his seat.

There was a gnawing feeling that we were losing Rahim to what we thought was “inclusive” education. We were part of a school system where fitting in the right way meant slowly learning to get rid of our differences.

Inclusion as a one-sided deal

The school administration started singling out our students for minor behaviour transgressions. I sense that their fear about the students’ conditions or labels led them to extreme measures of discipline. Despite the students’ efforts to fit in, the school did not think they were ready to be educated with their peers. Like many well-intended trials, the inclusion program was stopped.

I still wonder where within our education system do my students belong. In mainstream settings, especially in expensive private schools, they might be accepted if we “pitch” them correctly. They will need to quieten down, avoiding chaos and toning down physicality to not “scare” anyone. In other words, disappear what makes them neurodiverse to fit into the “normalness” of inclusion.

“Inclusion” in education in Tanzania feels like a one-sided deal. Me and my students are only invited if we can mimic “normalcy”. The moment we start expressing deep fears or interests, we are taught to be milder. The moment we move in certain ways we are thought to incite fear and safety concerns.

The invitation of inclusion is quickly questioned and even revoked in such situations. Yet we continually are meant to be grateful that we were offered the illusions of inclusion.

More than the limits of home

Even within our special school we discriminate between students. We have different sessions for students with extreme behavioural challenges. Some are adults and some are teenagers. They are often described as learners who cause destruction, who cannot follow instructions, who run away, and who threaten their safety or that of others.  

One of them is Anna (also a pseudonymn). On paper she has the same diagnosis as Rahim. Yet, her life at school has passed in managing her difficulties and minimizing harm, but she equally seeks love and care. Her hormones rage as every other teenager and she has the strength of Hulk. Her episodes of rage destroy property and hurt others.

I wonder, what should inclusive education for Anna be like? In all my years in education, we never learned how to support students with more severe behavioural challenges. It is difficult to watch Anna hurting herself and others. But her bond with staff and how she hugs us tells us that we are providing something to her. Her life should have something more than the limits of home, but what does this something more look like for Anna? 

Threat of institutionalisation

While working with students like Anna there is a real fear we carry. If she loses support from her family, she will most likely be destined for a psychiatric institution.

When I was a teenager and no one could decipher my “I don’t know” answers I briefly visited one for an evaluation from a psychologist. I didn’t go inside but I heard noises of chains on metal and what sounded like many people stuck inside a small room. The stench hasn’t left me.

People talk about the lack of care and abuse that goes on in these places. Now I know that they chain their patients. One case I know of someone institutionalised left the child scarred, non-speaking and with extreme behaviours that still haunt her and the family until this day.

What I wish inclusive education could be

Our school has given hope to many people, including myself. I feel the smiles and joys in the school can fill empty souls with glimmers of hope. But our students need more, beyond safety and a place to be.

I wish we practiced “inclusion” differently. I no longer want my students to be included as a favour or out of pity. I no longer want them to be included if it means they need to change themselves to fit in. It is not inclusion if you have to walk on eggshells and always fear being excluded.

There is a certain heaviness I feel in writing this article. Not belonging is a very difficult feeling to process. I see it in my students’ constant requests to be part of mainstream schools. So many years have passed where we are begging to be in schools and then regretting what we receive.

For me an inclusive education would have been not just a place where I was academically challenged but where I was safe amongst my peers to share my more intense sides, my fears of daily tasks, panic over changes. I needed teachers to validate my feelings and make adjustments without posing them as favours.

A long journey left to travel

Research and policy in my country have become fancier. Yet its intended audiences, which are learners with disabilities, are yet to truly reap its benefits, or even feel like we belong within the same education system.

I share the stories of Anna and Rahim, for those policy-makers and researchers who are doing important work in education. I tell them, I do not see our realities in your work.

As I find solace and safety in anonymity, I write out of hope. Maybe in faraway lands people like me and my students do not need to morph ourselves, do not need to be grateful when demanding our rights, or constantly show our positive side and inspiring stories.

I also write to ask my fellow Debriefers if you live in such a land. Tell me how inclusion has worked in your countries for learners like Anna and Rahim. I know that we need more, Anna and Rahim need more.

Asanteni, thank you,

Nyuki

Outro

Further reading. Read more love-hate relationships with education on Their mission? to mould us. And see the Debrief library. for a collection of resources relating to education and children with disabilities.

Let your friends know. Sharing the newsletter is how people find it!

Connect. Get in touch, and find Disability Debrief on Linkedin.

Help us do more. Make a one-off or recurring financial contribution to the Debrief.

Acknowledgements

Thanks to Sonaksha for their amazing illustration and to Peter for editing and providing a safe space for me to share my realities throughout the writing process.

I would also like to thank the Disability Debrief newsletter, its contributors and its funders, as its content has made me more globally aware of disability-related issues, and it continues to inform and shape my professional practice and personal growth!

Finally, a huge thank you to my students, your stories and our bond gives me the courage to be braver, kinder and more understanding of myself, and you all have ignited a fire in me, that I hope will never fade.