Advocacy efforts have been successful in creating awareness disabling misconceptions that drive demand for body parts of people with albinism.
“My mother abandoned me when I was a baby.”
This is the beginning of Jane Waithera’s life story who like many People With Albinism, tells of a journey that saw her living in a community that had little knowledge on albinism resulting in her being constantly bullied and others simply keeping their distance, fearing the unknown. Jane says that what hurt most was not the taunting, but the stares and looks from complete strangers who would at times cross to the other side of the street almost as if albinism was contagious. It isn’t.
Jane’s only support was her grandmother who raised her and often battled with teachers to allow her to join their classes. Looking back now, Jane feels more fortunate than most as she was able to rise above her circumstances and now as a social entrepreneur, has founded Positive Exposure Kenya. But above all, Jane is grateful to be alive and for a person with albinism in sub-Saharan Africa, the threat of death is quite literal.
According to the Office of the UN High Commissioner for Human Rights (OHCHR) “a lucrative and macabre market” has emerged in the body parts of people with albinism being traded for use in witchcraft rituals, potions or amulets, with reported prices ranging from $2,000 (Sh200,000 ) for a limb to $75,000 (Sh7.5 million) for a ‘complete set’ or corpse.
“In Malawi, people with albinism face ‘total extinction’ ” read the headlines, following the first official visit to Malawi in April 2016 by Ikponwosa Ero, the UN Independent Expert on the rights of Persons with Albinism. She warned that the atrocities faced by persons with albinism in Malawi render them “an endangered group of people facing a risk of systemic extinction over time if nothing is done.”
HARSH REALITY
People with albinism are subjected to stigma and discrimination ranging from bullying at school to more extreme manifestations such as kidnappings, grave desecrations and physical attacks that are often fatal with bodies being dismembered. These acts have been promulgated by several myths and superstitions purporting that their body parts hold magical powers.
Women and children are particularly vulnerable as some of the myths claim that having sex with a woman with albinism can cure HIV/Aids making them targets of sexual assault. Other claims are that children’s body parts yielded more potent potions. Mothers are ostracised or discriminated against if they give birth to a child with albinism because it’s seen as the result of a curse, a bad omen or of infidelity.
“Many do not sleep peacefully and have deliberately restricted their movement to the necessary minimum,” Ero said.
“The frequent involvement of close relatives in cases of attacks is highly disturbing, and persons with albinism are unable to trust even those who are supposed to care for and protect them. Consequently, persons with albinism in the current context of attacks are locked in a spiral of fear and poverty.”
Additionally, the perpetrators are rarely caught let alone prosecuted. And for the few who are convicted, the sentences do not always reflect the gravity of the crime.
“As pointed out by various stakeholders during my visit, stealing a cow may attract a higher penalty,” Ero added.
grave statistics
According to the ‘Reported Attacks of Persons with Albinism’ report dated September 27, 2016 by the Canadian charity ‘Under the Same Sun’, after reviewing 180 countries, it lists 187 recent killings and 314 attacks, all within 26 African countries; noting that many attacks and killings in Africa are not documented or reported.
It further notes that countries known to be involved in the cross-border trade of people with albinism and their body parts include Tanzania, Burundi, Kenya, DRC, Mozambique, Malawi, South Africa and Swaziland.
THE CASE OF JAMENYA
The upsurge of persecution of people with albinism in Malawi was seen after Tanzania enacted tougher laws to combat the violations witnessed in their own country, with the United Nations reporting that nearly eighty persons with albinism in Tanzania have been killed since 2000.
The attacks in Tanzania led to warnings that gangs have carried attacks in Kenya for the trade in Tanzania. Consequently, in 2015, people with albinism living near Kenya’s border with Tanzania moved away amid fears that they were targets by witch doctors who were keen to sell their body parts as good luck charms to politician hopefuls, more so as Tanzania’s nationwide elections were approaching.
This came following the case of Enock Jamenya who was reported to have been attacked in his home in Vihiga district by a gang of thieves demanding money. When he told them that he didn’t have any money, they asked for an ear or hand to sell in Tanzania. Though they were interrupted and managed to flee, the gang left Jamenya wounded and unconscious. He later on succumbed to his injuries.
On September 2, another UN report was issued and this time round, Mozambique where unlike the widely reported cases in Malawi and Tanzania, attacks were a new phenomenon. Following her 12-day mission to the country, UN’s Ikponwosa Ero said persons with albinism have suffered more than 100 attacks since 2014 and added that she was “deeply struck” by the sense of fear within the community.
It is evident that the persecutions are as a result of lack of awareness and education, which enabled for misconceptions to thrive with increased exploitation by witch doctors and criminals.
KENYA’S MILESTONES
This prompted Kenya’s advocacy efforts to be spearheaded by people with albinism and if you ask many, it has been a success and at the very least is a message of hope for sub-Saharan countries.
Jane is a perfect example having been a Washington Mandela Fellow for Young African Leaders Initiative and now seeking to economically empower and mentor people with albinism through her organisation.
Honorable Isaac Mwaura, the nominated member of parliament for special interest groups as a person with albinism, managed to get the government to allocate funds for provision of sunscreen in hospitals as well as free protective clothing for persons with albinism; another milestone.
Alex Munyere, the founding chair of the Albinism Society of Kenya and now the head of the Albinism Programme at the National Council for People with Disabilities says they are currently registering people with albinism in Kenya, with approximately 3000 persons registered thus far.
“The registration is not only important for mapping purposes but it will aid in planning and resource allocation for interventions.”
The programme, which receives Sh100million annually for education assessment and resource allocation, has been able to fund several entrepreneurial projects and is also supporting the provision of sunscreen in public hospitals across all counties in Kenya.
Munyere attributes the growing success of people with albinism in Kenya including having Africa’s first albinism society, to a collaborative strategy,
“From the beginning we were keen to work with the government and form partnerships with other agencies and organisations. We are only able to achieve more in this way as opposed to each man fighting in his corner.”
High Court Judge, Hon Lady Justice Mumbi Ngugi and now presiding judge in Kericho, emphasised on the need for support systems to facilitate the integration of Persons With Albinism in society.
“I would like to see children with albinism educated in integrated schools so that they get used to other people and other people get used to them as at the end of the day, we are all human beings living under the same sun.”