Preliminary findings on her visit to the Republic of South Africa16 to 26 September 2019

Independent Expert on the enjoyment of human rights by persons with albinism

At the invitation of the Government of South Africa, I undertook an official visit from 16 to 26 September 2019.
From the outset, I would like to express my gratitude to the Government for the invitation to undertake this visit and for the excellent co-operation I’ve enjoyed throughout the preparation and execution of my visit. I wish to particularly thank the focal points in various Ministries, particularly the Department of International Relations and Co-operation. I extend sincere thanks also to the colleagues at the regional Office of the High Commissioner for Human Rights in Pretoria, for their excellent support and efforts in making my visit a productive one.

I held meetings in Gauteng and the KwaZulu-Natal provinces.  I was also able to meet with government officials representing the following Departments: International Relations and Cooperation; Women, Youth and Persons with Disabilities; Social Development; Justice and Constitutional Development; Basic Education; Higher Education and Training; Health; Sports, Arts and Culture; Planning Monitoring and Evaluation; Public Service and Administration; Home Affairs; Cooperative Governance and Traditional Affairs; Correctional Services; Statistics South Africa, South African Police Services; National Prosecuting Authority; State Security Agency and the South African National Defence Force. I also met with the Law Reform Commission and “Chapter Nine” Institutions, specifically with representatives from the South African Human Rights Commission; Commission for the Promotion and Protection of the Rights of Cultural, Religious and Linguistic Communities and the Commission for Gender Equality.  

I was able to meet with offenders convicted of crimes against persons with albinism and representatives from faith-based organizations, traditional healers, academics and researchers. I also visited Prinshof School for the visually impaired and met with learners with albinism in Durban.

During the visit, I held a consultation for over 40 leaders of civil society organizations serving persons with albinism from six provinces in the country – nearly all of whom are persons with albinism. Through this consultation, I learned of their first-hand experiences and provided technical support in the process of developing a national action plan on the promotion and protection of their human rights in South Africa.

I take this opportunity to sincerely thank each person that made time to meet with me and share their journeys and experiences.

Context

My visit occurred during an opportune time: national albinism awareness month.It was in this context that President Ramaphosa made a statement concerning the situation faced by persons with albinism in the country at the outset of my visit, which I welcome.

It was also during a period when South Africa has been confronted with challenges on several fronts. Prior to and during my visit there were various pockets of unrest and protests erupting throughout the country and large-scale problems around gender-based violence and femicide as well as xenophobia. In this context, I was reminded again of the turbulent history that many people of South Africa have endured, including the scourges of racial discrimination, marginalization and inequality during the apartheid era and its ongoing consequences.

However, I also take note of the remarkable progress that has taken place in the country since 1994, including through a Constitution that entrenches respect for diversity and inclusion. It is in this spirit, that I urge the government to ensure that its National Development Plan pays specific attention to groups of persons that have been left furthest behind in gains made in the last 25 years.  This also a means to accelerate implementation of the Sustainable Development Goals.

Attention to systemic issues must be addressed, however, the plight of the most marginalized such as persons with albinism – who bear the brunt of social and economic inequality – must not only find a place in the nations’ collective conscience, but also be a measure of true progress. This can be accomplished through the carrying out of concrete measures both in the form of specific interventions focused on them alone (to provide relief and rehabilitation and put an end to attacks and other extreme forms of human rights violations). At the same time, it should also involve active integration into larger relevant issues such as disability, health, education, national responses to gender-based violence, xenophobia and HIV and AIDS among others, for the fulfillment of their human rights in long-term development initiatives. 

Positive initiatives

The 1996 Constitution of South Africa contains one of the most comprehensive Bill of Rights, providing protection against various human rights violations as well equal attention to economic, social and cultural rights and civil and political rights. I am pleased to note that persons with albinism can also benefit from legislation such as the Promotion of Equality and Prevention of Unfair Discrimination Act, the Employment Equity Act and the Legal Aid Act 39. I am particularly pleased to note that the Prevention and Combating of Trafficking in Persons Act also covers the trafficking of body parts, and not just trafficking of persons and organs. This is an important provision in the context of the type of ritual attacks faced by persons with albinism.

South Africa has also signed the African Union Protocol on the Rights of Persons with Disabilities which specifically mentions persons with albinism and has also adopted a National Action Plan to combat racism, racial discrimination, xenophobia and related intolerance. I also learned that a draft Bill on the Prevention and Combating of Hate Crimes and Hate Speech intends to specifically criminalizes hate speech against persons with albinism among other vulnerable groups. South Africa is also working towards domesticating the Convention on the Rights of Persons with Disabilities into national law and its Witchcraft Suppression Act (1957) is undergoing law reform.

The Ekurhuleni Declaration on the Rights of Persons with albinism adopted by delegates at the 2013 National Albinism Conference, also aims to eradicate all forms of discrimination against persons with albinism.

However, despite all the positive initiatives taken by the State to establish laws and policies to safeguard human rights, including for persons with albinism, serious challenges and obstacles to the realization of these rights remain.

Data and Statistics

Throughout my visit, I was unable to obtain concrete statistics related to persons with albinism in the country. Essentially, there are no official data or statistics in any context, whether through disaggregated data on disability or other data source such as police,  health records and the department of the Public Service Association which monitors the employment of persons with disabilities. Academic health and genetics surveys estimate a prevalence of around 1 in 3,900 to 1 in 4,000 with certain ethnic groups and communities in South Africa having as high as 1 in 832 persons with the condition.

I was not able to obtain specific data on the overall number of cases involving crimes against persons with albinism. However, I was pleased to know that there is work being done to create a database at the South African Police Service, which is aimed at determining whether cases involve persons with disabilities and a potential to indicate the type of disability or impairment concerned. Albinism often results in  visual impairment, and therefore persons with albinism could potentially be identified in this database.  I highly recommend accelerating implementation of this database to save lives and protect persons with albinism who are vulnerable to attacks and killings.

My meeting with Statistics South Africa and relevant stakeholders in this regard was an opportunity for me to underscore the fundamental need to collect disaggregated data not just on persons with disabilities, but on persons with albinism who are uniquely disadvantaged in the country due to their vision impairment and impairment relating to their skin condition – resulting in discrimination based on multiple disabilities as well as discrimination based on colour. It is important to restate that data is essential to inform policies and initiatives for the promotion and protection of human rights of persons with albinism.

South Africa has the opportunity to alleviate the problems related to lack of data on persons with albinism in the forthcoming census scheduled for the year 2021. I would like to reiterate the need to include a question on persons with albinism using the format proposed by the Washington Group on Disability Statistics as was done in the recent census in Kenya. 

Stigma and Discrimination

In several official languages in South Africa, persons with albinism are referred to with highly derogatory names. These include “inkawu” or monkey, “isishawa” - meaning a curse, and “Leswafe” - meaning washed out or bleached. Some of these, such as inkawu, are official translations of “person with albinism” found in language dictionaries. Other relatively dignifying terms such as “albino” in English and “Isiphiwo” meaning, gift in isiZulu, are rejected by most persons with albinism in South Africa as the former equates the person with their condition and the later mystifies the person with albinism. These names, particularly inkawu, and isishawa, dehumanize persons with albinism, perpetuate stigma and myths, drive discrimination and are used to justify attacks against them.

The Hate Speech Bill provides an important avenue to humanize and effectively protect persons with albinism. Furthermore, the Commission for the Promotion and Protection of the Rights of Cultural, Religious and Linguistic Communities, has the relevant mandate to facilitate – with the help of civil society representing persons with albinism – acceptable and dignifying alternatives names for persons with albinism in all relevant official languages.

It is not uncommon for people to spit on their chest when seeing a  person with albinism in South Africa, as a way of protecting themselves from having a future child with albinism.  Family members and intimate partners of persons with albinism sometimes face public ridicule and persons with albinism are often socially excluded from various aspects of community life. The situation has a damaging cumulative effect on the psychosocial health and self-esteem of many persons with albinism, some of who reported overall fear of going out in public due to mockery, rejection and discrimination. A fear that is now compounded with ongoing security issues.

To entrench dignified names for persons with albinism, and to speed up the change in mindset and misbeliefs about persons with albinism particularly in the rural and border areas, requires sensitization including mass awareness-raising efforts at the grassroots for a minimum period of two years, which is based on best practices. Such sensitization should be wide in scope, continuous and not ad hoc. They should also target sectors such as education and health, use local languages and involve persons with albinism themselves. 

Right to Life and Security of Person

I was informed of a number of cases of various types of attacks and extreme human rights violations against persons with albinism – most of which occurred in the last 5 years. They include murder and the harvesting of, as well as trafficking of body parts. These are reported cases alone. Given the minority status, quantitatively-speaking, of persons with albinism, an attack on one person with albinism is a significant threat to all. Moreover, it is important to note that no single organization in South Africa is dedicated to or focuses on monitoring and reporting attacks on persons with albinism in a systematic way. Persons with albinism who I met during my visit, indicated fear of attack and insecurity particularly in the areas of Mpumalanga, Limpopo and KwaZulu-Natal. These “hotspots” are border provinces, leading many to believe that these attacks, -- most of which are ritual attacks spurred by manifestation of belief in “witchcraft” -- are a foreign phenomenon imported and perpetrated by nationals from neighboring countries in the region. In the context of challenges around xenophobia in the country, I note that the majority of convicted and apprehended perpetrators of these crimes are South African. The old and entrenched myth in South Africa that persons with albinism do not die but disappear suggests that persons with albinism require special attention with respect to the enjoyment of the right to life and security of person.  Furthermore, cross-border trafficking in body parts ought to be addressed by the Southern Africa Development Community (SADC) and meetings of regional police chiefs.  I encourage South Africa to assume a leadership role in this regard.

Several cases indicate that family members and close friends are often involved in these crimes. It is important that a situational analysis dedicated specifically to the issue be conducted to amass evidence of a wider scope to ascertain the real state of affairs. Where appropriate the use of protection orders should be enabled. In addition, studies on the wider national challenges such as gender-based violence and xenophobia in the country should factor-in the compounded vulnerability to violence of women with albinism and persons with albinism who are foreign nationals in the country, as they have not been spared from these systemic issues.  Law enforcement should continue the awareness raising they tend to conduct in the hotspots, but should be proactive and not reactive in putting protection measures in place. They could, for instance, involve genuinely remorseful perpetrators serving jail sentences in a nation-wide campaign against belief in myths and violence against persons with albinism. Furthermore, when these cases are reported to police, detailed data on whether the victim is a person with albinism or other pertinent quality ought to be recorded to inform effective strategies of prevention.  The ongoing review of the Witchcraft Suppression Act (1957) should be continued and reoriented to protect victims of ritual attack, witchcraft accusations, and the general public from charlatans posing as traditional healers and practitioners of witchcraft who exploit the pre-existing vulnerabilities of persons with albinism among other marginalized groups.

Right to Health

Persons with albinism are highly vulnerable to skin cancer. Therefore, it is laudable that the government has added sunscreen lotions to their list of essential medicines, thereby making the product available and free of charge to persons with albinism. However, persons with albinism are concerned with the availability, accessibility and above all the quality of  government-provided sunscreen lotions. These elements are concerning given that skin cancer is the primary killer of persons with albinism. While there are no data on this issue in South Africa, and the country stands out in the region with a medium human development index and is a middle-income country, the poverty rates among persons with albinism and those living in rural areas, as well as lack of education on the importance of sun protection measures in these areas in particular, indicate that this is a matter that ought to be addressed. Best practices include local production of sunscreen including through social enterprises that employ persons with albinism and other persons with disabilities andmass procurement of high-quality sunscreen chosen after meaningful consultation with persons with albinism themselves.

The psychosocial health of persons with albinism was repeatedly brought up in the context of frequent humiliation and discrimination – from the society at large, from health workers including upon the birth of a child with albinism and in the exercise of maternity care, sexual and reproductive health rights, at schools, churches among other spheres of society. I note that persons with albinism suffer trauma and depression from ongoing stigma and discrimination, which often lead to suicidal tendencies, including in children and youths.  The cumulative effect of social exclusion thus takes a toll on persons with albinism and their families. Medical professionals should equip parents of children with albinism right from birth with accurate knowledge on the condition. Information on albinism should be incorporated into all curricula training health and education personnel across the country. Civil society organisations that support persons with albinism should be empowered and supported to spread knowledge of albinism both generally and within the disability framework and a concerted effort ought to be made in promoting public understanding of the principle of reasonable accommodation.

Right to Education

Reasonable accommodation measures in school, including the provision of assistive devices, the placing of persons with albinism at the front of the class, among others, is often wanting in mainstream schools in South Africa. Consequently, some persons with albinism opt to attend special schools for the visually impaired. However, at special schools, resources for purchase of assistive devices and teacher-awareness of, and about how to effectuate reasonable accommodation are not always available especially in communities constituting the lower socio-economic strata of society.

Security was often cited as another key reason why persons with albinism attend special schools which are often boarding schools and tend to have gated perimeters with dedicated security among other protection measures. However, perceived security at some of these schools are porous and one of the best special education schools, Prinshoff opens into a highly insecure part of Pretoria. Security is a non-negotiable measure for children especially those who have disabilities, in this case, those who are visually impaired and/or are at risk of various forms of attacks.

Bullying of learners with albinism was reported in both mainstream (integrated) schools and special schools. However, it appears to be worse in mainstream schools as learners have sometimes opted to attend special schools to escape bullying. Children of mothers with albinism have also been subjected to bullying at schools. It is important not to normalize bullying as ‘what children do” as the effects on learners with albinism are compounded. The discrimination they face is often not confined to one environment, but permeates nearly all  spheres of society. Introducing the topic of albinism and persons with the condition into school subjects on life skills, diversity, human rights and civic responsibility, from an early age will likely re-orient learners away from cultural mystification about the condition and mitigate bullying.

Employment and standard of living

I learned that persons with albinism like other persons with disabilities face extensive discrimination and marginalization when it comes to accessing employment opportunities. I also learned that the State and the private sector had difficulty in achieving its 2% target of employing persons with disabilities. When persons with disabilities were hired, there is a tendency to relegate them to low ranking jobs, and in the case of persons with albinism, jobs outdoors that expose them to risks of skin-cancer. The lack of understanding of the principle of reasonable accommodation amongst some government officials and non-government entities is a serious barrier to inclusion in this regard and in the case of persons with albinism, is compounded by little accurate knowledge about the condition and widespread myths.  The compounded issue of a commonly repulsed or racialized appearance combined with visual impairment influence the ways in which employers and co-workers regard people with albinism. 

The disability grant, provided to all persons within a particular (low) income bracket who meet an impairment test, exists to mitigate the shock of poverty for persons with disabilities. Persons with albinism reported that they have been disqualified from this grant for failure to meet the “impairment” test. Due to both the variation in vision impairment among persons with albinism on the one hand, and lack of knowledge on the condition on the other, the grants have been issued to persons with albinism across the country in a non-uniform way. I urge the government to move away from the medical approach to disability that is entrenched in the grant-issuing processes and standardize the provision of the grant to all persons with albinism.

Representation

In all relevant public processes and discourses such as pertaining to disabilities, health, education, among others, it is important to not only make efforts to reach out to persons with disabilities generally, but also those who have rarely been represented in these spaces. To this end, I note that there are scores of groups representing persons with albinism in nearly all parts of the country. They have also, with my support, created a national forum for collective decision making and advocacy. They foresee – with the help of government and other stakeholders – the development of a time-bound national action plan to promote the enjoyment of their human rights including safety and security. This is a best practice in neighboring countries and provides an avenue for government to concretely intervene in areas that persons with albinism themselves have identified as priorities.  I urge the government to not only support the development of this national action plan, but also to fund it as has been done in other countries in the region such as Kenya and Malawi. All current funding to civil society organization ought to be revisited and equitably distributed to diverse national civil society groups serving persons with albinism, or reallocation to the national action plan once developed. This is crucial to both mitigate fracture within the movement and also to respond to priorities identified by all civil society serving persons with albinism.

Throughout my visit, I was very concerned at the inaccurate portrayal of persons with albinism in the public domain. These misrepresentations feed into the stigma and discrimination that persons with albinism experience on a daily basis. I call upon those in the creative art industry and in media to consult widely in the development of shows that are on TV, radio, among other media, and to include persons with albinism in ordinary roles that highlight the positive contributions they make to society like other persons without albinism in South Africa. I also call upon all media personalities particularly journalists who often report crimes against persons with albinism to report these cases sensitively and responsibly. These include avoiding the use of dehumanizing names,  sensational reporting, and leaving out the alleged prices of body parts that could incentivize perpetrators of attacks.

There is a great deal of work to be done to correct these dangerous misrepresentations as the consequences can fatally affect persons with albinism throughout the country.

Recommendations

The following is a summary of preliminary recommendations. A comprehensive list of recommendations will be provided in the official report of my visit to the Republic of South Africa, which will be presented at the UN human rights council in March 2020.

It is recommended that South Africa:

• Work on re-naming persons with albinism in all official languages using humanizing terminology in recognition of their dignity
• Include a question on albinism in the forthcoming census in 2021
• Undertake a situational survey to identify gaps in security and protection measures for persons with albinism particularly in rural and border towns
• Carry out intensive continuous awareness-raising about albinism across the country, particularly at the local and rural community levels with emphasis at border towns; and these should involve persons with albinism in all stages of the process.
• Increase resources at mainstream and special education schools to support reasonable accommodation including the training of personnel on the practical implementation of reasonable accommodation and purchase of assistive devices for persons with albinism.
• Immediately improve security infrastructure at special education schools where children with albinism often find refuge
• Incorporate accurate information on albinism in curricula of education and health professionals.
• Provide support including psychosocial and socio-economic support to victims of attacks and their family members
• Work with remorseful and willing inmates in demystifying albinism and harmful practices linked to abuse of witchcraft and traditional practices
• Work on the re-naming of persons with albinism in all languages using humanizing terminology in recognition of their dignity
• Implement all recommendations made by the UN Committees on the Rights of Persons with Disabilities, and the Elimination of all forms of Racial Discrimination and others.
• Give consideration to persons with albinism in future state party reports to the treaty bodies and the Universal Periodic Review
• Adopt and fund a national action plan on albinism, based on the Ekurhuleni Declaration and the Regional Action Plan on Albinism in Africa, which was adopted by the African Union.