Whenever you engage Mr. Matthew Karungu, who has lived with Cerebral Palsy for the past 37 years, there is always one thing he wants to make clear.
‘‘Most people think people like me (with Cerebral Palsy), can neither think on our own nor control our destiny,’’ he clarifies.
This is a great misconception, fueled largely by ignorance and deep-seated stigma in the society, which he says has perpetuated negative attitudes that people hold towards others living with a disability.
Like any person living with a disability, his life has been punctuated with challenges, in a world that seems to pay little or no attention to people abled differently.
But for more than three decades and a half, Mr. Kamuyu’s journey with disability has seen him confront every conceivable obstacle on his way, shining hope to millions of others that all is not lost.
As the world marks Cerebral Palsy Awareness month this March, Mr. Kamuyu reflects on his treacherous journey, that has taken him through three surgeries, and the struggle to be heard over the din of an oblivious populace.
As CP champion, Mr. Karungu is fiercely unapologetic. He takes no prisoners, and will never keep quiet any time he notices someone wants to take advantage of his situation.
According to the Centres for Disease Control (CDC), there are nearly 18 million people globally living with Cerebral Palsy. The CDC describes CP as a group of disorders that affect a person’s ability to move and maintain balance and posture.
It is considered the most common motor disability in childhood which is caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control their muscles.
The education conundrum
Education is arguably one of the greatest challenges that people living with a cerebral palsy face, particularly because their educational needs are unique and need a blended approach that gives such children a holistic learning experience.
Mr. Kamuyu tells me, that getting a school was a herculean task for his family. ‘‘We tried many schools without much success,’’ he says.
The breakthrough would come in 1993, when Joytown Special Primary School in Thika town, some 42 kilometres northeast of Kenya’s capital city, Nairobi. But his nth time luck wasn’t straightforward.
The last stop before his breakthrough, he had landed at the Treeside School in Kasarani, which educated children with mental disabilities. Here, the headteacher, having assessed Mr.Karungu, would advise his mother Ms. Wangari Kamuyu, that the school may not be useful, and instead, she needed to get one where there is a holistic education that also offered therapy.
‘‘The headteacher looked at me and saw I was a bright young boy and said that I needed a school that provides education and therapy at the same time,’’ he recalls.
With that, his educational journey began at Joytown school. He began boarding at the age of nine(9). But he did not join grade one as yet. He tells me, he started in a special class for three years, which was meant to prepare him for the roller coaster ahead.
‘‘I was being taught general grooming. How to bathe, and to be on my own without assistance,’’ he notes.
But he says his first day in school was not a walk in the park. Having been used to the home environment, and the tight bonds with his mother, being left to his own devices broke his heart. He describes the three years in special class as a ‘‘weeping season.’’
‘‘I cried almost daily for the three years. Every time my mother came to visit me in school, I shed tears,’’ he admits. Within three years, he had his first surgery. This medical procedure was meant to loosen some muscles in his legs, which made it difficult for him to walk properly, with his feet firmly touching the ground. Instead, he walked with a serious difficulty, almost tiptoeing.
He topped the special class, and with successful surgery, was now ready to join grade one, the following year, 1996.
And so for the next three years through to 1998, the second born in a family of three, went through his lower primary, and another surgery to boot in 1998. ‘‘This surgery sought to release my abductor’s muscles, to be able to separate my legs. Previously, my knees used to knock each other,’’ he says.
According to www.healthline.com, abductors are important muscles that contribute to one’s ability to stand, walk, and rotate legs with ease. These muscles are responsible for not only moving the leg away from the body but also helping rotate the leg at the hip joint.
The hip abductors are necessary for staying stable when walking or standing on one leg. Weakness in these muscles can cause pain and interfere with proper movement, ‘’ it says on its website.
‘‘I don’t have hip joints. That’s why I am unable to walk without aid,’’ he says.
For Mr. Karungu, between 1999 and 2002 he experienced persistent excruciating pain on his right hip, so much so that he could barely move. In 2002 when schools closed, he never went back to Joytown. He was in class seven.
Curious, I sought to find out what had gone amiss for him. Two things. First, the Joytown school was a Salvation Army-sponsored school. The Sunday routine of going to church twice -morning and evening- was too much to bear.
The second point has to do with discovery. His aunt who at the time was a lecturer at Kenyatta University had just completed her Ph.D. in special education. It happens that in the course of her study, she had interacted with quite a number of schools dealing with children with disability.
That’s how she stumbled upon Disabled Children’s Home in Ol Kalou, in present-day Nyandarua County, some 180 kilometers from Nairobi. What’s more? The institution was Catholic-based, which dovetailed very well into Mr. Karungu’s religious persuasion, being a staunch Catholic.
At his new school, he was asked to repeat class seven, that by the time he joined class eight, he would have another surgery. The transition was a boon for Mr. Karungu’s religious growth.
‘‘While there I enrolled for my catechism, culminating into my current name, Matthew Kamuyu Karungu, ’’ he tells me.
In 2004 while in class eight, Mr.Karungu underwent hip surgery. It was such a delicate operation that he asked doctors not to put him on full anaesthesia, so he could witness the procedure. The operation took three hours.
For the next six months, Mr.Karungu says, he could not do anything for himself. He was being fed like a baby. He remembers the surgery day like yesterday. The 5th of February 2004.
The effect of this was that he was in school for just three months only the whole years. January, September, and October, eventually sitting his exams in November of the year. Managed an impressive 248 marks out of a possible 500.
For his secondary school, Mr. Karungu, through his aunt again, would join the Kestrel Manor School, which is an inclusive international school offering British National Curriculum and special needs education for differently-abled children in Nairobi.
When he joined the school in January of 2005, he went straight to form two or year 9 in the second term, given the school’s calendar round from September. Having done grade eight which is like year eight there, he was exempted. And here, unlike the other previous schools, he was a day scholar.
It was at this school that he came across another therapist, whom he describes as being chiefly responsible for what he is today. ‘‘I was getting the usual therapy but then there was musical therapy where you just enter a room, giving headphones and you do nothing except listening to music. This really opened me up, ’’ he tells me.
Having finished his fourth-year exams, Mr. Karungu’s thirst for academic emancipation did not end there. He would later join the Digital Advisory Learning Centre (DALC) in Nairobi where he studied diplomas in Business Management for three years.
‘‘In the first year, I did a standard diploma in Business Management where I did 10 projects using a computer, In the second year, I did an advanced diploma in Business Management, with 10 projects while in the third year, I did a graduate diploma in Entrepreneurship and Small Business Management, with 18 projects,’’ Mr. Karungu explains.
In 2012, luck fell his way and he got an internship at the then Communications Commission of Kenya (now the Communications Authority of Kenya). Here, Mr.Karungu says his eyes were opened to a new world of possibilities. Being able to reconcile what he had fervently studied in school and what happens at the practical workplace was a dream come true.
‘‘I did not know I would ever be employed. At the end of the internship, my supervisors really admired my work ethic. They however encouraged me to go back to school and further my studies. They also promised me that once I acquired that degree, I should inform them,’’ he notes gleefully.
That was the deal of a lifetime. Mr.Karungu had no excuse to meet his end of the bargain. He could not afford to squander such an opportunity.
So he went back to DALC, where he wrote a thesis, and was able to secure credit transfers to the Business School of Costa Rica, eventually graduating with a Bachelor’s degree in Business Administration, with a bias in Entrepreneurship and Small Business Management.
In 2016, Mr.Karungu officially joined the Communications Authority of Kenya (CA) where he currently works as an Intellectual Property Rights Officer.
That was not all. He would go back to school again, this time around. Graduating with a Master’s degree in Strategic Management from the San Juan De La Cruz University in Puerto Rico.
Looking back at his journey in the quest for academic excellence, Mr.Karungu now has the benefit of insight and has ideas on how to ensure inclusivity in the education system. This includes deliberate policy interventions to ensure that special schools are enabled with the necessary infrastructure and attitudinal shift to give value to those living with disabilities.
‘‘In every school, as a matter of policy, half of the teachers should be trained in special education. Additionally, special schools need to have a personalized education approach that suits the individual uniqueness of children abled differently,’’ he exhorts.
In his case, for instance, he wonders why he had to struggle with copying notes from other students when teachers knew very well his condition affected his ability to use his hands like other children.
Some schools are also not offering conducive environments for children living with disability to learn well. One of his unforgettable memories from his school life was when a worker at one of the schools told him that he was ‘‘too foolish to amount to anything in life.’’
And some not-so-good teachers would clobber them properly, whenever they ran afoul of the school rules.
He encourages parents with children abled differently, not to be ashamed of them, and instead, support them in every way they can, so that the children can exploit their full potential.
‘‘Do not hide your children. We can do anything that any other person can do. We are not abnormal,’’ he admonishes.
One other thing that has perturbed Mr.Karungu was how deep-rooted stigma is enshrined in society. He says for instance after he moved out of his mother’s insurance cover upon attaining adulthood, no insurance company was willing to cover him. They all claimed he was a high risk.
‘‘They claimed I was a high risk, yet I have been in good health all along. The irony is after they got wind that I am now employed, they have been bombarding me with offers of their products. I have not tired of reminding them how they neglected me in my hour of need,’’ he says, tongue-in-cheek.
With strides made in his illustrious 37 years with Cerebral Palsy, Mr. Karungu’s story is a singular testament that there are no limits to what one cannot. Even with a disability, he has been able to overcome all conceivable barriers to be the best he can.
The year 2021 was a watershed moment for him, and his quest to live a fulfilling life. He finally moved out of his mother’s house!
And this is the message he wants the whole world to know, loud and clear, as we mark Cerebral Palsy Awareness month this March.
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