Muthi Wami

to Learn, to Love, and to Live | Page

Preface

Albinism is most prevalent in Africa than many parts of the world. This alone, demands of us, Africans, to pay serious attention to the question of how to ensure that people with albinism live a life of dignity.

As it stands, in countries like Tanzania and Burundi (and the recent reports including a growing prevalence in the Congo, Mozambique, South Africa and Zambia), people with albinism live in hiding and/or fear of being murdered. Their standing out as different has amplified myths that ‘they possess superpowers and that their body parts bestow health and fortune’.

These myths need to be dispelled in order to end the violence against people living with albinism. This book contributes in a small way towards this goal—through the unfolding of an unlikely love story.

––––––––

––––––––

Synopsis

Mvuseni was a boy from a rural area with little education, but lots of experience which were passed onto him through a sacred family tradition of inheriting a gift of a special kind.

This was no ordinary gift, title or responsibility to inherit. One could not deny nor avoid it when the time came to manage the responsibilities it came with. You were called to heal and healing you did!

Mvuseni, like his father and his ancestors, was called into the practice of traditional healing. The responsibility was great and needed the strictest levels of sobriety, discipline, and self-awareness in order to observe the sacred requirements it brought with it.

He neither anticipated his good fortune nor contained his excitement when he met with Nongcebo at a traditional wedding in the township of Mamelodi from the city of Tshwane (Pretoria). To attend this wedding, Nongcebo had to be extra persuasive to her mother, who had started showing fear for her well-being following what could be regarded as an incredible incident of prejudice—or at least according to her mother. 

Nongcebo neither perceived nor classified herself according to prescriptions assigned to people living with albinism. Nothing was a disability in her; she functioned perfectly well and was well on her way to fulfilling her dream of being a chef.

She was doing her final year of Hospitality Management at Elangeni, a private TVET (Technical and Vocational Education Training) College, closer to her home, at the township of Kwa-Mashu, North of Durban (Kwa-Zulu Natal).

Her impressive record at her training institution qualified her to work at any prestigious establishment. Alas, she was denied an opportunity. Her potential employers assumed she was disabled. Why? Because, like many, they assumed that all people with albinism have a visual impairment that can‘t fully be treated or managed.

With no establishment doors opening for Nongcebo, she eventually opted to volunteer whenever opportunities were made available to her.

When she heard that the catering company for the wedding which she later met Mvuseni could no longer make it, she jumped at the opportunity to help out.

All that had been planned for that wedding didn’t happen as the bride and groom wished, but the significance of the ceremony was carried out with precision, thanks to all those who volunteered to help in their hour of need.

––––––––

Overview

What has become more widespread is the prevalence and legitimization of perceptions, assumptions, stereotypes and discriminatory undertones which are taken as fact.

People, who appear as believing in and act dissimilar to everyone else are falsely perceived as less deserving of human rights with its accompanying access to health, quality education, sustainable employment, and many other freedoms that may enable them to live in dignity.

Mvuseni and Nongcebo were part of the above cases. As a young man, he had inherited a special gift, which in all honesty was a calling neither volunteered for nor easily rejected once it came. He was oblivious to the demands, responsibility and difficulties it came with. What made the experience unbearable were the ideas, untruths, and activities which through no intent on his part came to characterize traditional healers.

His father, Ntate Motheo was his primary caregiver who understood what his child was going through and knew the amount of hardship Mvuseni would encounter by virtue of his calling. Ntate Motheo chose to not inform Mvuseni of his family history and assumed an ancestral appeasement ceremony he organized was enough to stay the hand of his ancestors from transferring the mantle on his son. Alas! It was not to be so.

Nongcebo was a young woman with a world of ambitions, hopes, and expectations. Yet in all of her wishes, few would be achieved with little struggle. She was born with the condition of albinism which was ascribed a variety of sources for its existence. Some claims were that she is cursed, is a ghost, possessed magical powers and was disabled which suggested incapability.

Her mother was constantly pressurized with a tinge of optimism and thus chose to adopt a cautious approach. For Thembeka to comfortably grant her daughter the freedom to travel alone outside of Kwa-Zulu Natal was quite unnerving for the both of them. Nongcebo neither perceived nor classified herself according to stereotypes assigned to and superstitious prescriptions enforced onto people living with albinism.

As a person classified as disabled due to her condition of albinism, she didn’t always enjoy the fairest of treatment. This label alone dissolved common decency from some people she came into contact with. It eventually resulted in her unfortunate exclusion from the entire academic, social and employment fraternity including deprivation from privileges enjoyed by everyone.

Mvuseni as a typical young man paid less attention to matters he considered mind-numbing, outmoded and reserved for the older generation. He wasn’t interested in and thus unaware of much information regarding his family’s cultural history of and that he was predestined to become a traditional healer. It hadn’t been fully revealed to him nor had he undergone anything remotely close to the process of initiation, and he only knew his father to be a gifted herbalist.

He was unacquainted with any relative of his with albinism and as such held no hostile views or a qualified opinion on the subject. Until after the wedding ceremony he attended, Nongcebo would be the first woman he viewed romantically and the first time Mvuseni came into contact with a person living with albinism.

This was an occasion where the two of them were amateurs on the subject of romance.

They shared so many things in common; neither one of them had enjoyed the presence of the other half of their biological parents. Nongcebo lost an opportunity of being raised by a father, owing to unforeseen circumstances which kept Mr. Khuzwayo out of her life.

Mvuseni only heard feint tales about Nonqaba his mother. She passed on a few months after giving birth to him. Her entire life was a simple expression of her humanity. Giving birth to Mvuseni was the extension of her adoration for Ntate Motheo; unfortunately, their marriage didn’t last long past an incidence which informed so much of Mvuseni’s search for meaning and belonging.

Nongcebo desperately sought through creative ways to conceal and fill the void brought aboutthrough the the absence of her father. Mvuseni needed to experience what the love of a mother contributes in a young man’s life.

Neither one of them volunteered to assume the unique gift which was influential in how they lived, loved and experienced human interactions.

Mvuseni stood to become a traditional healer, a calling that suffered negative reputational damage, which was amongst others, a consequence of atrocities directed toward people living with albinism.

Nongcebo was groomed to disregard, distance herself from and disavow any suggestion of culture, customs, and the practice of traditional healing, justifiably so.

But what if she unexpectedly fell in love with someone who was said to be aligned with, observant of and called to embrace everything that her mother admonition her against?

Follow along as we journey into learning, loving and living...

Introductory chapter

Thembeka, Nongcebo’s mother read a lot in order to be better equipped to take care of her special child. She often came across frightening stories of how people living with albinism were brutalized in other countries.

It wasn’t long after they were inhumanely evicted from Groutville, such a memory and other disconcerting reports were not only affecting Nongcebo but her mother whose circle of friends and distant relatives had been reduced by virtue of giving birth to a child with albinism.

It is in such situations where people in countries such as Tanzania, unwillingly yet for fear of the turbulence which threatens their safety opt for a life of an isolated existence, imposing a painfully regrettable, but necessary exile in order to get to taste a degree of a normal life.

It is deeply sad to note that in a world where people by virtue of being human are inherently free to pursue any course they so desire, yet some live a life that is through no fault of their own, predestined for untold amounts of hardship, crippling fear and the gnawing possibility of death at every turn they make.

Sometimes the sources of abuse ranged from family, romantic partners, and community members of people living with albinism as co-conspirators in the illicit trade of human trafficking.  They unashamedly betray their loved ones in order to receive ridiculous amounts of financial compensation for their complicity in this gross violation of human rights.

Nongcebo’s family had tried all in their power to shield her from all of these startling statistics, news headlines and gossip within her community since her birth. She would often get the persistent thought of possibly there being a degree of disgust, annoyance, and ridicule whenever she went out of her house alone.

Blank stares, insincere smiles, and continued isolation were Nongcebo’s daily realities. As much as she knew herself to be different, in fact, special was the term used by Nongcebo’s mother, Thembeka; yet something deep inside kept distressing her fragile and now inquisitive mind.

It was in her character as a child to attract attention due to her colorful personality and uniquely pale skin tone.

Children, with their innocent, communal and commonly accommodative nature couldn’t care much about the obviously distinct appearance that she had.

Many of her peers resorted to literally worshipping her; some repeatedly wondered and innocently asked how it felt like to be her. Nongcebo, to her peers, resembled the same popular white people they frequently saw on TV; they were afterall not an illusory imagination or an unreachable reality becauseone of them (Nongcebo) was in their midst.

There were always people who would direct an assortment of questions at her, even though several of which were clearly discomforting, she couldn’t place much thought in what they were really driving toward, as she was still a child.

Her friends took turns and even fought amongst each other over the opportunity to receive exclusive attention from Nongcebo; whenever she was allowed those rare moments of mingling with other children. Since Nongcebo was mostly home taught and kept indoors, she found socializing during her adolescent passage quite difficult.

In as much as she relished the opportunity of sharing her interesting discoveries with her friends; it wasn’t always a welcomed gesture for everyone within her circle of peers. Children could ascertain and didn’t even care much about the obvious differences, not even her pale skin as compared to their various shades of brown.

Nongcebo’s peers had parents who didn’t always warm up to the idea of seeing their children interact, share toys and have contact with Nongcebo. To them, Nongcebo’s different skin tone was a curse and a grave illness which was contagious enough to affect their children and render them social outcasts, as she was.

Some reactions bothered Nongcebo, especially in cases where she was embarrassingly admonished in point blank. Sometimes she was not always welcomed in certain homes. Nongcebo could not understand why playing with children her age made some parents generated hostilities toward her. In as much as she was young, she had seen a few undertones of discrimination from their parents to somewhat shield herself by rejecting some invitations from her friends to play.

Nongcebo was a naturally cheerful person and had not found it necessary to share such negative encounters with her mother each time it occurred. Thembeka taught Nongcebo to remain optimistic, grateful and self-loving so as to prematurely prepare her for the life of hardship she would yet face as time progressed in her entire life.

It was quite common for her friends to clamor around Nongcebo for her attention, the aim being to impress her with speaking in English. The general assumption ascribed to her astute attitude and vast knowledge of the world within which she lived, was that Nongcebo was umlungu (was a white person). To keep the momentum, Nongcebo, excelled at every task her homeschooling teacher was exposing her inquisitive mind to.

Nongcebo was slowly developing sensitivities around how people reacted toward her. Reading their facial expressions coupled with body language coupled with hand gestures made her adopt a particular coping mechanism, which wasn’t always convenient.

Nongcebo adopted a habit of pretending to enjoy the attention she was getting as a way of assessing people’s reaction toward and  intrigue around her appearance.

Each time Nongcebo grew close to a person, there would be something that deterred such individuals away from her. She then elected to closely assess how they behaved but understanding the why they were orientated in such a manner always evaded her.

The children Nongcebo interacted with were far too young to understand how her advanced senses operated. Keeping them preoccupied was how she decided to establish facts which informed their behavior around her. It was quite common for disagreements, innocent curiosity and a bit of bullying to take place. Nongcebo avoided being the target, by inventing creative ways of keeping her friends entertained with colorful fables. Still, her inquisitive mind wasn’t content with not connecting the dots and answering the gnawing reasons of the persistent "why!?"

There were certain instances where some parents rejected the idea of Nongcebo sharing unsupervised relations with her young friends. She reasoned that perhaps, the envy was sparked by her special appearance (albinism).

Nongcebo experienced far too many times how spontaneous disagreements turned into family bitter feuds mainly fought between her mother and the parents of such children. In certain instances, she heard of how the schools where her friends attended were fertile ground for bullying, even to children who seemed ordinary.

The issue of diversity, tolerance and cooperation were not always encouraged at the pre-school level. Some teachers and parents assumed that cooperation will be easy to achieve due to the children appearing physically similar. The value systems they each embraced couldn’t possibly have caused conflict and contradictions, they reasoned. Many assumptions about unity ruled the general thoughts of people, which in some instances ended up causing more harm than good.

Thembeka always tried to help Nongcebo understand how different she was and not to pay too much attention on how people reacted toward her.

To avoid being too friendly and to limit the possibility of drawing undue attention toward her; she adopted a few behaviors which helped her assimilate into and cooperate with the broad consensus of her peers.

Managing conflict situations before they erupted into something bigger and complex became a habit impressed upon her mind from an early age. So when the potential for being bullied arose, Nongcebo’s immediate response was to divert attention away from her by introducing interesting games for her friends.

Being homeschooled sometimes presented some disadvantages for Nongcebo. In as much as it allowed for critical learning outcomes and her wildest imagination to be tested to its limits, it indirectly deprived her of social skills.

A downside to all of this were restrictions imposed on her because she lacked frequent interactions with other children. The motive and logic to keep Nongcebo away from public schooling were partly a consewuence of perceptions which many people held about her different skin tone.

Nongcebo’s community still believed superstitious views about people with albinism.

It was obvious that should Nongcebo attend pre-school with the rest of the children from that community, chances of being excluded from daily activities while being treated in a special way were bound to happen given the absence of extensive literature and educational programs regarding facts about albinism.

Nongcebo’s health was free of any visible challenges which were evident and expected of every child of her age. Except for the rapid and involuntary eye movements and partial visual impairment coupled with a high sensitivity to the sun (potential for and susceptibility to skin cancer), nothing else merited the level of awkward stares and air of gossip which followed Nongcebo’s every move.

Nongcebo repeatedly found herself attracting attention even when she had no intentions of doing so. In most cases, it was due to the fascination that engulfed many people she came into contact with. Nongcebo had Thembeka, a mother who paid careful attention from an early age and learnt as much as possible in order to mitigate unnecessary risks by managing her sensitivities better.

This special care made Nongcebo the more appealing and fresh-faced, with a tinge of a pinkish blush which was evident whenever she smiled or enjoyed her usually frequent moments of laughter.

To the many people she had contact with, their natural reaction was to assume that Nongcebo was a rare young "white girl" who could admirably converse in IsiZulu and mingle with Black people with absolute ease. Her hairstyle, skin tone and unique approach to most things didn’t sell her off as one similar to them except for her ease in interaction and particular behavior around them (friends).

It was a conscious decision made by Thembeka as a way of creating options for and enhancing Nongcebo in case her immediate family, friends and people she associated with didn’t accept her.

The life Thembeka initially planned for Nongcebo was disrupted unexpectedly.

Thembeka always suspected that as much as some people seemed to outwardly welcome the birth of Nongcebo; the generally less expressed sentiment they concealed was that of enchantment, disgust, fear, and superstition.

True to Thembeka’s suspicions, the unimaginable happened.

The Khuzwayo’s (Nongcebo’s partenal family) initially seemed to not have any issue with how different Nongcebo was, suddenly started to act indifferently toward Thembeka.

It wasn’t long before rumors of Nongcebo possibly being the product of an extra-marital affair started making rounds in her township. Her maternal grandmother was coerced into firstly separating from them, thereafter relocating her loved ones elsewhere by some of her peers. She feared that she would be suspected of witchcraft if she didn’t do anything to protect Nongcebo by removing her from the semi-rural township of Groutville (Kwa-Nonhlevu) near Stanger in Kwa-Zulu Natal, where they stayed. Part of her concern was