Statement by the United Nations Independent Expert on the enjoyment of human rights by persons with albinism, Ms. Ikponwosa Ero, upon conclusion of her official visit to the United Republic of Tanzania – 18 to 28 July, 2017

Members of the Press,
Ladies and gentlemen,

I am pleased to present some of my preliminary findings following my official visit to Tanzania between 18 and 28 July 2017, at the invitation of the Government. It is worthy of note that the last visit of a similar Expert to Tanzania took place nearly a decade ago in 2008. In this regard, the invitation extended to me by the Government sends a positive signal.

During my visit, I travelled to Dodoma, Dar es Salaam, Mwanza, Shinyanga, Kigoma and Kasulu, where I consulted widely with Government representatives, United Nations and other international partners, the national human rights commission, academics and civil society organizations particularly those representing persons with albinism. Importantly, I visited numerous persons with albinism, including victims of attacks, to hear from them about their past and current experiences relating to the enjoyment of their human rights. I also visited schools used as temporary protection shelters for persons with albinism in the regions of Mwanza and Kigoma, and observed health services to persons with albinism delivered through civil society and government institutions. I wish to express my appreciation to the Government, particularly officials of the Ministry of Foreign Affairs for facilitating various high-level meetings, including with the Speaker of the House, Hon. Job Y. Ndugai, and the Attorney General, George M. Masaju. I also sincerely thank the Resident Coordinator of the United Nations in Tanzania and related specialized agencies for their logistic and substantive support.   

Data Collection on Persons with albinism in Tanzania

According to the Population and Housing Census report of 2012, the population of Tanzania was 44.9 million and there were 16,477 people with albinism with 2017 estimates at over 18,000. It is worth stressing that the census included a specific indicia for recording albinism. This is commendable as it is important for addressing issues relating to albinism beyond vision impairment such as skin cancer and discrimination relating to colour. However, the census also had methodological and practical limitations as the most remote areas could not be reached and it was reported that some persons with albinism may have been hidden by their families when the census was conducted. Various persons with albinism interviewed also reported not being questioned at the time of the census.

In light of these limitations, I welcome the ongoing plans between the National Bureau of Statistics and the Tanzanian Albinism Society to gather thorough information from local administrations through a database.

The right to life and attacks

Attacks against persons with albinism in the country received international attention for the first time about a decade ago in 2007. The seriousness of these attacks, many of which led to death, mutilation and displacement, prompted national initiatives from the Government, Civil Society, and other international actors.

I would like to welcome the information received about a decrease in reported attacks, in particular in the past year according to the data provided by the Attorney General’s Office. According to this data, to date, 66 cases have been reported and recorded, 55 of which were taken to court. In 2008 there was a surge in attacks with 22 cases reported, as well as in 2015 with 11 cases. These results were achieved due to governmental measures including the assignment of particular prosecutors to these cases and their placement on a fast-track to prosecution.

Freedom from fear

It is worthy of note that, while civil society also indicate a recent decrease in attacks, they report significantly higher numbers capturing a broad range of offenses. I was also informed by persons with albinism about various cases linked to the right to life that do not seem to have been reported. This is reportedly due factors such as the victim preference in reporting to civil society, the growing sense of national shame around the attacks and a corresponding unwillingness to report these crimes in the media, the difficulty of reporting attacks in remote areas despite the work of the community police and the lack of awareness of village leaders and local security committees who are often relied upon to channel these cases to the authorities.

In this regard, the Tanzanian Albinism Society, through its wide network at local level, as well as other civil society organisations, should receive stronger support in gathering and systematically reporting these attacks to assess them together with Government data. Past initiatives to harmonize data should reoccur with the view to ensure thorough coverage of information.

Further, data harmonization should include information gathering from relatives of victims as well as witnesses to violations both within and outside of temporary shelters, to confirm that the attacks are truly phasing out and are not simply going underground or silenced. The strengthening of data collection is also crucial for channelling relevant information to the communities on prosecution and sentencing in these cases, because such information appears unknown to many including direct victims of attacks. Moreover, the widespread dissemination of such information is bound to enhance deterrence.

The Penal code provision on possession of body parts is also fundamental in combating the trafficking of body parts although it was not yet used in the prosecution of cases relating to the attacks against persons with albinism-.

Similarly, in investigating and prosecuting crimes against persons with albinism, greater emphasis should be given to identifying the criminal masterminds, organizers, criminal customers for, and end-users of body parts as well as witchdoctors involved. According to the information provided, there have not been cases where the masterminds were prosecuted. The spread of information on prosecuted masterminds would significantly enhance deterrence.

Furthermore, some of these crimes include a cross-border element such as trafficking in persons and in body parts, which complicates investigation. The most affected areas being in the border regions. In these circumstances, such as in Kibondo which shares a border with Burundi, the police of both countries do hold regularly meetings at local levels, to facilitate trans-border police cooperation. Consular authorities present in Kibondo are also involved in facilitating cooperation. While these are positive steps, such a practice should be complemented by a clear police cooperation agreement between Tanzania and its neighbouring countries and relevant international organizations should be involved. In this regard, I welcome initiatives such as the development of a sub-regional plan on trafficking led by the International Organization on Migration and UNICEF.

The situation of persons with albinism living in refugee camps in border areas can also be precarious. A key example is the case of children with albinism in the refugee camp in Kasulu whose parents had requested extra protection, and these were relocated close to the police unit of the camp.

It is worthy of note that despite the measures taken to date by both government and civil society, and the decrease in number of reported attacks, persons with albinism still live in fear. As a case in point, I was informed that children with albinism are still being sent by their families to some of the schools used as temporary holding shelters, although this number has significantly reduced compared to the period 2008 to 2016.

Fear continues to cripple the livelihood and longevity of many with albinism particularly in rural areas. Unable, for security reasons, to leave their houses before sunrise or after sunset to work on their fields, their situation, often already precarious due to discrimination, further deteriorates.

Therefore, it is important to ensure that persons with albinism are included in programmes established by the Government to combat poverty. Persons with albinism should also be included in vocational training opportunities for a career change that is accessible independent of academic performance; one that leads to employment ensuring safety. Similarly, it is important to fully implement the quota established by the Persons with Disabilities Act 2010 requesting that 3% of persons with disabilities be employed within all companies employing more than 20 people. Broad publicity of this law among persons with albinism and companies should be a priority of the Government.

Support to victims of attacks and their families, including psychosocial, medical and legal support, is fundamental to assist them in rebuilding their lives and restoring their dignity. The Government has provided a certain degree of medical and material support to some of the victims of attacks, and this is to be commended. However, I would also like to stress the fundamental need for such support to fully take into account the security needs of persons with albinism.

Persons with albinism in shelters

As an emergency and temporary response to the surge of attacks when they were at their peak, the Government referred children with albinism to primary schools with boarding facilities, used as temporary shelters to ensure their safety. In the run-up to the election in 2015, the Government intensified its efforts to refer children with albinism to these shelters.

However, despite the good protective intentions, and while noting that no attacks have taken place in these shelters, it appears that they are no longer temporary, and have ceased to be considered an exceptional measure. In addition, students in secondary school or college have no choice other than to return to the centres during school holidays either for security reasons or because they have been abandoned by or could not trace their families. Moreover, despite the efforts made to facilitate family reunion, there remains a relatively high number of primary school students with albinism staying in the centre during the holidays. Furthermore, in certain centres, adults with albinism are also being provided shelters for security reasons.

Although measures have been taken in the past years to enhance the living conditions of children in these shelters, more needs to be done. Projects such as the one to build a new dormitory in Buhangija, or to provide new mattresses to Lake view school should be implemented. Other basic measures ought to be carried out including ensuring adequate food supplies to both children and adult alike, even though the centre is fundamentally a primary school.

Education provided at the centres visited is inclusive. However, in some centres, the classrooms are severely overcrowded, with over 100 students per class, negatively impacting education received, particularly for children with special needs including those with albinism.

Efforts made to facilitate decongestion through the reunification of children living in the shelters with their families show a positive trend. Commendable work is being done, along with the Tanzanian Albinism Society, to identify and contact the families of children. Consequently, more children receive visits from their families or leave the shelter to visit their families during school holidays.

However, work remains to be done to identify the families of all children. Many stakeholders stressed that on the one hand, too often, communities and families are not ready to receive their children, including for security reasons, and on the other hand some children with albinism do not feel safe to return to their villages.

Stronger efforts are therefore needed to educate the communities and strengthen the protection measures for children with albinism at community level, including by working with the security committees at district and ward level and by providing basic security items such as mobile phones and structural reinforcement to unsecure homes.

Root causes of attacks

Although safety for persons with albinism seems to have increased in some areas in the Lake Zone that were previously plagued by attacks, and consequently, children are being encouraged to return to their communities, this safety remains highly fragile. This is indicated by the fear of returning home reported by many who are displaced as well as the strong presence of root causes of attacks as follows.

The widespread discrimination and attacks against people with albinism has a long history that is deeply rooted in myths such as those propagating that they are not full human beings, that they do not die but disappear or that their body parts have special powers when used in rituals and concoctions prepared by witchcraft practitioners as well as other end-users.

These myths have also led to the abandonment of children with albinism, and the rejection of parents of children with albinism by their families or communities. Furthermore, the hypervisibility of persons with albinism, along with the lesions that skin cancer leaves on their skin, combined with a lack of general education on albinism, contributes and strengthens the myths dehumanising persons with albinism.

As a matter of priority, it is fundamental to raise awareness on albinism to fight such rampant myths and resulting discrimination. Intensive awareness-raising on albinism particularly one that is long-term and extensive, in all national and local languages – reaching rural and border areas was identified as highly necessary by every stakeholder encountered. Nearly all stakeholders pointed out that these should be well-strategized targeting the most affected areas, and involving persons with albinism, local leaders, traditional healers and faith-based organisations.

In this regard, I would like to highlight the project carried out in 2015-2016 by UNESCO on community sensitization, using community radio and employing the sociocultural approach by empowering key community stakeholders and family members of persons with albinism to in turn mobilize their communities to protect and promote the well-being and rights of persons with albinism. The success of this program in changing mindset is a strong indicator that similar efforts are required and would be effective as both a preventive and protection measure in the immediate to long-term.

With regard to other measures needed to address witchcraft practices, the Government has already taken the commendable measure of registering traditional healers. Yet, on this matter, it is fundamental to have actual oversight of their work and to keep on working to disperse the confusion that still exists, at least for the general public, between the practice of witchcraft and traditional healers. The current revision of the Witchcraft Act provides an opportunity to address this issue. In this regard, I look forward to working on this matter with Tanzania and other states facing a similar phenomena.

Poverty is both a result of such discrimination for persons with albinism and a root cause of the attacks against them as the body parts of persons with albinism are allegedly valued for large sums of money. In addition, poverty and discrimination drive persons with albinism living in rural areas to houses not equipped with basic security items such as locks, and sometimes located on the outskirts of villages.

While poverty is a general issue, and gradual eradication is reasonable, the Government should take immediate measures of poverty alleviation that are targeted and tailored to persons with albinism, who live in a milieu of stigma and fear of attacks, in order to guarantee their rights to life and security as well as their right to an adequate standard of living.

The right to health

Skin cancer remains the number one killer of persons with albinism. There is one hospital in Tanzania, located in Dar es Salaam, fully equipped to treat skin cancer with both chemotherapy and radiotherapy. Yet, the diagnostic cost and cost of accessing services, particularly for those outside Dar es Salaam is high.  This means that those who are poor and likely need treatment the most from outdoor work, are unlikely to access or receive treatment. Various interlocutors with albinism reported the significant frequency of deaths of persons with albinism before the age of 40. This is particularly concerning, as these deaths at a young age are preventable through low-cost measures. 

Best practices have been established by the Regional Dermatology Training Centre and civil society, such as the use of mobile clinics screening persons with albinism twice a year. This service is commendable due to government investment in terms of space provision and the provision and cooperation with local dermatologists. It is also worthy of note that the mobile clinics distribute locally made sunscreen, the first of its kind in Africa. Producing sunscreen locally which addresses the needs of persons with albinism is indeed the best way of ensuring a regular and sustained supply of this essential medicine to persons with albinism.

That said, the clinics and the sunscreen distributed are only able to reach an estimated 3,500 persons with albinism, and is in dire need of stronger involvement from the Government to both broaden their outreach to all persons with albinism in the country and to ensure sustainability of production since the entire substance of the project continues to heavily depend on external donors. Government should consider rolling out a  national skin cancer prevention strategy similar to those that have been rolled out for other forms of cancer in the top-ten category of cancers plaguing Tanzanians.

The right to education

The inclusive education programme that is currently being implemented is commendable as children with albinism are being brought over from specialized schools. However, these children cannot benefit from this education if they are not provided with necessary reasonable accommodation, including visual aids such as glasses, monocular and large-prints material. In most cases where children interviewed had monocular lenses, these had been provided by civil society.

In this regard, the Government should support-for-take-over such initiatives and facilitate the importation of relevant raw materials and adaptive aids. The Persons with Disabilities Act 2010 sets the framework for these policies in order to ensure the realization of the rights of persons with disabilities.

Task Force

The establishment of a Task Force against killings, murders and abduction of persons with albinism, which has effectively synthesised the work of previous committees working on the issue is to be commended. The strategic plan of the task force should be endorsed by government, particularly the prime minister’s office as its contents – which effectively mirror the regional action plan on albinism recently endorsed by the African Commission on Human and Peoples’ Rights – provides a solid framework for strengthening the gains attained to date through a multi-stakeholder approach including government.  Without such endorsement from government and, thus, without legal basis, the Task Force remains too fragile to effectively deliver on its promising plan.

Moreover, the appointment of a person with albinism as Deputy Minister on Policy, Parliamentary Affairs, Labour, Employment, Youth and the Disabled was widely applauded by all stakeholders. Unfortunately, as he has now been transferred to other duties outside of the country, the need for a government champion on the issue resurfaced among nearly all interlocutors. The presence of person with albinism within government championing this issue is a best-practice in the region and promises to give long-term effect to the government initiatives. This official would also be highly valuable in championing the strategic plan of the Task Force within government.

Members of the Press,
Ladies and gentlemen,

Let me conclude by stressing that renewed political will is needed to ensure that the results achieved are sustainable. Indeed, efforts in this regard should not be deterred given the population size of persons with albinism in the country. In fact, their size is a litmus test of how some of the most vulnerable ought to be treated. Efforts to pass this test will require work to eradicate the root causes of attacks to ensure that myths are dismissed and that the perception of persons with albinism changes, even in the most remote areas. Such efforts should heavily involve persons with albinism themselves and the capacity of Tanzania Albinism Society should be strengthened to facilitate this process in rural areas.

Evidently, progress has been made towards increased safety. However, as such progress remains highly fragile, the Government, law enforcement and public authorities, civil society and other stakeholders – while addressing rootcauses and the effects of attacks –  should keep security in focus and at the core of all their interventions in favour of persons with albinism. The multi-stakeholder approach taken to date including by government and civil society is testimony to the effectiveness and efficiency of cooperation in this regard.

Nonetheless, the government bears the primary duty in the enjoyment of human rights by persons with albinism, and its strong commitment is necessary for maintaining the results achieved, particularly with regards to safety, health, education and awareness raising measures. Continued commitment is necessary to ensure that current gains are not lost and that the fragile peace attained does not disappear.