Sailing in Storms: My Story as a person living with disability

There is a common saying that disability is not inability. Yet many people tend to see people with disabilities as unable to perform some tasks. In many societies, disabled children are denied education, which means they cannot learn a profession even though they may only be physically disabled. Such unschooled individuals end up depending on their immediate families and the rest of the society for a living.

In other societies disabled children are deemed to be cursed or victims of witchcraft. They end up being isolated or even abused. Often one finds physically but also intellectually disabled children and adults (ab)used as beggars on the streets of our towns.

However, even the most handicapped individual has the ability to fit in and belong to the society. All they need is support and care like that given to non-disabled persons.

This is the point that Phitalis Were Masakhwe makes so eloquently but also passionately in the book Sailing in Storms: My Story as a Person with Physical Disability (Brainwave Publishers, 2021). This is the story of overcoming incredible obstacles placed in the way of a person by the society just because he is physically disabled.

Masakhwe’s story is one of being born in the best hospital in East Africa in 1968, Mulago Hospital, Kampala, Uganda, under the best medical care possible then but still being afflicted by polio. It is the story of growing up in difficult circumstances, having to struggle every day to go to school, having to make extra efforts to play with other children, as usual, trying to fit into the normal daily routine – such as having to answer questions from other curious children on what happened to his legs among others.

But having caring parents and relatives was the difference between Masakhwe staying at home and going to school. His father and mother eventually took him to the local primary school. The one major problem, though, was that it was six kilometers away. Yet Masakhwe didn’t have a wheelchair – there were hardly any in rural Kenya in the 1970s.

Masakhwe would often walk to school, with the aid of a walking stick that he had fashioned for himself. Sometimes the mother would carry him on her back. Other times he would literally have to crawl on the stony or muddy village paths on the way to school. He had to endure the hot sun, the dust or the rain, whichever element was in season.

At school, Masakhwe had to jostle with fellow pupils for space on the cowdung-smeared classroom floor. He would then have to find his way to the pit latrines, sometimes helped by his teachers. Despite all the challenges one would imagine a disabled child would experience in a school full of able children, Masakhwe’s spirit remained defiant and lit. He would go on to emerge among the top three students in his school in the 1983 CPE. He was then admitted to secondary school but there was no money for school fees.

Masakhwe was so determined to join secondary school that he physically camped at the office of the area Chief, seeking help. Help did arrive but not the kind that he was looking for when he was admitted to a local private school. There was little or no learning going on at the school.

Masakhwe then embarked on round two of looking for a school and a benefactor. Luckily he got admitted to Mombasa Secondary School, a national school for the physically disabled, even though the school was about 1,000 kilometers away from home. The Mombasa school had the right facilities. The teachers were supportive. Masakhwe would go on to pass his KCE with a Division One. He was then admitted to Musingu High School, back in Kakamega.

Life at Musingu would be a struggle for the two years because the school didn’t have disabled-friendly facilities. Yet, Masakhwe would remain committed enough to his classwork to go on and pass his exams, leading to admission at the University of Nairobi.

But even the citadel of academic pursuit had its shortcoming. The university environment too wasn’t necessarily friendly to someone with a disability – accessing the library, lecture halls and some offices was a serious challenge to him.

Struggles and success

At the university he met a lecturer that he describes as ‘anti-disabled’ and one who told him that he would never be hired as a teacher by a college simply because he was disabled. Yet, he would also discover that there was opportunity to speak out, to argue one’s case about the treatment she or he received.

Masakhwe says that it is at the university that he started his journey into activism. It is a journey that would lead him to work with a number of international organizations and eventually the County Government of Kakamega, where he is the Chief Officer in charge of Service Delivery. He has worked with Plan International, AMREF, ActionAid, UNDP in Afghanistan, among others.

Today Masakhwe is a happy family man, doing all in his ability to contribute to the welfare or his family, community and country like any other abled Kenyan.

But why should anyone read his story? Isn’t this just another one of the many tales of overcoming life’s hurdles that Kenyans tell? What is so special about Sailing in Storms: My Story as a Person with Physical Disability?

Probably this story is really like hundreds of others, told and untold, by hundreds of people with one disability or another in Kenya. This story reminds the reader that a misfortune such as befell Masakhwe, that despite being born in the best hospital in Uganda at the time he contracted polio, can befall anyone. Masakhwe’s story tells us that disability is not necessarily caused by evil but often chance – an accident or a misdiagnosis.

How do we demystify disability? How do we undo the prejudicial language that persons with disability live with every day? How do we confront and reinvent practices that have undermined and underprivileged persons with disability for a long time?

Sailing in Storms may retell Masakhwe’s struggles and success in life, but there are millions of persons with disability in the world who will never go to school; who will never acquire knowledge and skills that would make productive in society; who will never live decent lives, simply because the communities in which they were born equated their disability to inability.

The writer teaches literature at the University of Nairobi. [email protected]