Thembelihle Ngcai, a former journalism student at Rhodes University, shares her address delivered at the Inclusive Education Indaba held in East London in March. Ngcai currently works in communications at the Eastern Cape Department of Economic Development, Environmental Affairs and Tourism.
Nearly 20 years ago, I was diagnosed with a neuromuscular disease called spinal muscular atrophy (SMA), which is characterised by a wasting away or weakening of all the muscles in the body. While I was able to walk for most of my life so far, as per the prognosis, I’ve since lost that ability.
Apart from a loss of lower limb mobility, I struggled and still struggle with daily activities such as standing and sitting, walking, climbing stairs and holding heavy objects independently. A few years ago, during my first year at Rhodes University, I was returning from a lecture with some of the other students I had met.
Naturally, as was the case in most of my interactions with fellow students that year, they were curious about my disability. Anyone who knows me knows that I’m incredibly open about the trials and triumphs of being a black woman with a disability, so I welcome and encourage questions. Hearing about the challenges I endure, one student said: “Well, congrats for making it to university.”
I contemplated this strange congratulation as I walked back to my residence, asking myself: “Kanti, what do people do after high school?” Nakhona, if you took disability out of the picture, what was it that I was doing that could be considered an achievement?
When I looked around for people who had visible disabilities, I found none in my residence. I knew two in all the courses I took, and on campus I could probably count them all on one hand. Yet the comment stayed with me for all these years because it perhaps encapsulates why inclusive education matters. Finding that comment strange was natural. I had grown up in a family that, very soon after my diagnosis, affirmed me as someone who equally had something to contribute to the world.
Education was not a question. Pursuing and achieving my dreams was not a question. I had physical limitations, but my ambitions need not have any. This was a recurring theme that people around me, including teachers, instilled.
When I was diagnosed, I was actually living in a village. I lived with my grandparents who’d had a limited education. They didn’t know the intricacies of this rare disease, but they were unwavering in their determination to give me a great future. So I moved to East London to be close to my medical practitioners and, in the process, gained access to opportunities.
I often wonder how differently my life would look today, if not for their determination all those years ago. A lot of people who know me won’t know that, upon my relocation to East London, my incredible paediatrician at the time, the late Dr Norman Cooper, wrote a letter to Clarendon Primary, recommending that I be admitted.
He shared the concern that my full potential would not be realised if I went to a special school. I was welcomed by both staff and students at Clarendon with this ethos and culture that I was there to realise my potential, in the same way other children were.
Clarendon was great. When I arrived to start Grade 6, all the children in my class had been sensitised that they would be welcoming a “special” girl to their class. They were to give me the “Clarendon welcome”. I even had a chaperone, who ensured that I fit into the school seamlessly.
The thing is, though, I never did fit in. Sure, teachers and students knew I had a disability and they were sensitive in all our interactions. Most of my classes were moved downstairs so I could access them, but I never fit in. During a physical education class, swimming gala or athletics days, I would sit on periphery and watch other children make and concretise friendships through their mutual interest.
When it was a five-kilometre school walk for charity, I was alone in the bus that chaperoned the girls to and from their destination. When all the other children sat cross-legged in class rows on the floor during assembly, I sat alone, in a chair, at the back of the hall. In the classes that couldn’t be moved to accessible floors, it would take me longer to arrive in class and by the time I did, the teacher had already started the lesson.
The alternative? To be carried by a fellow student. As I was desperate not to miss anything, I allowed myself to be carried up several flights of stairs. On one occasion, I wound up in hospital with injuries.
As I turn 25 soon, what I’ve realised about being born with a disability is that I grew up acutely aware that I had a disability.
I was acutely aware of where I was versus where everyone my age was. This awareness turned into a debilitating fear of being left out that seeped into my adult life. In the absence of people who looked like or had similar challenges to me in primary and high school, and even university, I tried to shrink myself instead of embracing who I was.
I was seen and labelled as “special”, which further alienated me and made it daunting for other children to approach me or even relate to me. It’s easy to dismiss these experiences of not being included outside of the classroom as minor in relation to the reality that I went to one of the best, most well-resourced schools in the province, but these things do matter.
They set the tone for how we, as children and later as adults with disabilities, resign ourselves to the fact that we just will never be part of our communities and society. More importantly, children who grow up without seeing disability and diversity valued in the settings like school grow up to be adults who congratulate us for normal adult milestones.
These children grow up to ask us, “So what’s wrong with you?”, before they even know our names. Inclusive education is not just placing a child in a mainstream school. It’s not just sensitising staff and learners about an individual. It’s not just accessible infrastructure through universal design or accessible learning materials or even a differentiated curriculum.
It’s not just about what happens in the classroom alone. Nor just about having affirming and reassuring support at home. Inclusion is not forcing children with diverse needs to conform to the accepted norm. What characterised my experience was either feeling like I had to shout, wave or scream to be included, that I had to assimilate or leave my disability at home.
This is not a unique experience. Too often, the burden to be included falls on the person with a disability. When they can’t morph themselves, when they can’t chisel parts of themselves and their disability in order to fit a system not designed for them, they are rendered “too disabled” to be a part of their community and society.
These children are the same 500 000 children who still languish out of the school system today. They are the same children who are exhausting themselves navigating systems that are designed to say that the inadequacies lie within them, and not in the absolute fact that we as leaders have not made a focused effort with appropriate investments to create an authentically inclusive system.
I want to live in a world where children with disabilities can better relate to their peers with or without disabilities, because they have been given the tools and support to participate equitably in all things. I want to live in a world where children with disabilities are better able to assert their sexual rights, because sexual health education in schools is not able-bodied centred.
I want to live in a world where my boyfriend isn’t considered an extraordinary person because he “endures” all the challenges that come with a partner with a disability. I want to live in a world where we don’t lower the expectations for people with disabilities, but where we value genuine achievement. I want to live in a world where disability is not exceptional but normal.
I want to live in a world where capacity, ability and potential outweigh limitations. We can build that world for all our children. We can longer relegate the responsibility to do so solely to teachers and principals. It is all of our jobs, in whatever capacity, to build an empathetic, conscious, sensitive society that embraces difference.
We can only do this if we look at inclusive education as an opportunity, not a burden. So, to quote former United States President George HW Bush: “Let the shameful walls of exclusion finally come tumbling down.” My name is Thembelihle Ngcai. Thank you.