The international attention in favor of people with Albinism in Africa

Introduction

Among the numerous problems that today afflict the African continent, it is possible to note that Albinism is particularly relevant and heavily affects the lives of many people, particularly in Sub-Saharan African countries.

As shown in this article several measures have been taken in order to preserve the lives of people with Albinism; in order to better understand this situation, firstly we will focus on the analysis of albinism; secondly we will analyze the conditions of albinos in Africa, with a focus on Tanzania and finally we will verify the measures taken in favor of this category of people.

1. What is Albinism?

Albinism is a rare, non-contagious, genetic condition that limits the body’s ability to process melanin[1], reducing or eliminating pigmentation in the skin, eyes and hair; it’s a lifelong condition and does not cause intellectual disabilities. This condition occurs if both parents carry the albinism gene, in which case the probability of having an affected baby is 1 in 4 (25%); this possibility is the same in every pregnancy, having no relation to other births.

Many children with Albinism have blue or brown eyes, occasionally the eyes might appear pink or reddish, because of very little color in the iris; because of these conditions and due of poor health and poor vision many children usually abandon schools. People with this condition are considered legally blind because their photoreceptors[2] are unable to appropriately convert light into clear signals to the brain, leading to a condition called nystagmus[3], having also problems with reduced depth perception and with tracking an object with their eyes[4]. Albinism occurs globally, in all gender, racial and ethnic groups affecting 1 person in 18,000; estimations of affected people as part of the local population vary from region to region, even though the highest rate is in Sub-Saharan Africa with an estimated 1 person in 1,400 people in Tanzania[5]

2. The condition of people with albinism in Africa

Discriminations and attacks on people with albinism are particularly frequent in sub-Saharan Africa because of superstitious myths surrounding their nature. Albinos in these regions are often avoided by their communities and viewed as non-human spirits or ghosts; some believe that minerals contained within albino body parts bring wealth and luck, leading to dismember and kills of many albinos, including infants and children.

“In some communities, erroneous beliefs and myths, heavily influenced by superstition, put the security and lives of persons with albinism at constant risk,” states the United Nations website. “These beliefs and myths are centuries old and are present in cultural attitudes and practices around the world.[6]”

Albino body parts such as teeth, bones, genitals, and thumbs have been used in rituals by traditional healers and witchdoctor, who say they promote health, riches and success; these body parts, consumed as “medicine” or carried around for good luck, are dried up, ground, and packaged for illegal trade. According to a 2013 UN Report, some believe albino body parts are more potent if the victims scream intensely during amputation[7].Moreover, there are superstitions in some parts of Africa that albino body parts bring power, wealth or sexual conquest, that having sex with a person with albinism cures HIV and AIDS[8]. Furthermore, some believe that albinism is contagious and can be spread through touching, that their mothers were impregnated by a white man, that people with albinism have a low IQ and that they are housed by the ghosts of the European colonists[9]

The Office of the UN High Commissioner for Human Rights[10] stated in 2016 that albino hunters sell an entire human corpse for up to $75,000, while an arm or a leg could fetch about $2,000; related to that is also common that Albino graves are dug up and desecrated to procure body parts. There are very few health services in Africa focused on people with albinism, and many of those people cannot afford neither sunscreen nor protective clothing[11].Identified areas requiring both governmental and societal intervention include healthcare, advocacy and social awareness education, social inclusion, academic education, economic empowerment and socio-political protection from various forms of societal abuse and discrimination[12].

3. The Tanzanian case

As we have already seen, Tanzania has a high albinism rate (1 person in 1,400 people) that related to the high poverty of the country, (in which 80% of the population lives with less than $1.50 a day) makes life very difficult to people with Albinism, especially because of the cost of sunscreen, that is around $10, $15; furthermore, a very high number of Albinos murders have been recorded in this country, reaching 80 people since 2000, becoming one of the most dangerous countries for people suffering from this pathology.

Following increased international inquiry at the end of the 2000s, Tanzania began to utilize resources to cope with traffickers and protect people with albinism; in order to do so since 2007 hundreds of children were removed from their families, sometimes without any consultation or consent, and placed in shelters where they were isolated from society; according to activists who spoke to Human Rights Watch, orders from the government to protect people with albinism were enforced by district commissioners, who oversee security in their respective districts being also responsible for their safety. The Tanzanian government also tackled impunity for ritual crimes, notably by investigating, arresting and prosecuting those who attack or sponsor attacks against people with albinism; in 2015, it announced a ban on witchdoctors, leading to over 200 suspects who were reportedly arrested by the authorities. After ten years from the begin of the wave of killings and attacks these appear to have decreased, because of Tanzania’s stronger response to ritual crimes and attacks and protective measures, although these holding shelters are a temporary solution: “The shelters were emergency, temporary solutions. But 10 years is not temporary anymore,” an activist for the rights of people with albinism told Human Rights Watch[13].

4. Measures in favor of people with albinism

European Parliament

In 2017 the European parliament (EP) stated a resolution on situation of people with albinism in Malawi and other African countries:

1. ” The EP remains deeply concerned about the continuing systematic attacks and killings suffered by persons with albinism in Africa, in particular in Malawi, and strongly condemns any violence, discrimination and persecution directed at persons with albinism, as well as the trafficking of their body parts;

2. Urges the Malawi’s government, and the authorities of all countries affected, to take all necessary measures to ensure the effective protection of persons with albinism, as well as their families, and to eliminate all forms of discrimination against them;

3. Recalls the Malawi’s government of its obligation to protect the rights, dignity and physical integrity of their citizens in all circumstances and to put an end to the impunity enjoyed by their perpetrators by conducting the necessary investigations into these crimes and bringing those responsible to justice;

4. Acknowledges the efforts made by the Malawi’s authorities to tackle the phenomena; stresses however that progress is still lacking, in particular on improving the legal protection and action for victims, and ensuring adequate redress and rehabilitation mechanisms;

5. Calls on the Malawi’s authorities to adopt concrete strategies and policies to address the root causes of the phenomenon, notably by developing education and awareness-raising activities and campaigns on albinism; insists in this regard on the crucial role of local authorities and civil society organisations in promoting the rights of persons with albinism;

6. Recalls that access to healthcare and education remains a great challenge for persons with albinism which needs to be tackled; calls for greater investment in creating adequate social, care and counselling structures for victims, in particular for women and children, as well as a better response to their medical and psychological needs; insists that policies should be put in place to facilitate their reintegration in their communities;

7. Stresses the need to combat the marginalization of persons with albinism by ensuring their free and equal participation in society and the enjoyment of their civil and economic rights;

8. Calls on the authorities of the countries affected, in cooperation with their international and regional partners, to commit to taking all necessary measures to prevent and tackle the illegal trade of albinos’ body parts, track down traffickers and dismantle their networks;

9. Recalls that violence against albinos is often of a cross-border nature and insists on the need to strengthen regional cooperation on the matter; welcomes, therefore, all initiatives taken at the regional and international levels to fight violence against persons with albinism and in particular the recent adoption of the Regional Action Plan 2017-2021, jointly by the African Union and the UN which is a positive and concrete signal of commitment by African leaders; calls for its immediate and effective implementation;

10. Calls on the EU to closely monitor the human rights situation of PWA in Africa, particularly through regular reporting by its delegations in the countries most affected;

11. Reiterates its full support to the work of the Independent Expert on the human rights of people with albinism;

12. Calls on the EU and its Member States to continue to support the countries affected in fighting violence on grounds of albinism and improving the social integration of persons with albinism, notably through its development programmes and political dialogue and by sharing best practices and providing the necessary technical assistance;

13. Instructs its President to forward this resolution to the Council, the Commission, Vice-President of the Commission / High Representative of the Union for Foreign Affairs and Security Policy, the African Union and the Secretary-General of the United Nations[14]”.

NGOs

As stated by international human rights law, children with albinism have the right to live in a family environment. This is why local NGOs are making efforts to reunite children and families; among these Advantage Africa in the Busoga sub-region of Uganda is supporting more than 1,000 people with albinism to improve all aspects of their lives, helping children and adults with albinism to feel safe, accepted and included within their schools and communities. In doing so these organizations operates improving livelihoods, access to hats, high-factor sun screen, dermatology, vision and other health care services; moreover, it has introduced cryosurgery, a product that use liquid nitrogen to remove pre-cancerous lesions from the skin of people with albinism.

Tulime Onlus

Another important activity conducted by NGO is advocate in favor of people with Albinism, informing common people about this disease, thus eliminating prejudices and beliefs and conducting awareness-raising lessons in schools, achieving greater understanding among children, as Tulime Onlus is currently doing in the Iringa region in Tanzania.

United Nations

The United Nations (UN) has stressed the extreme discrimination faced by people with albinism; in 2013 the UN Human Rights Council called for the prevention of attacks and discrimination against PWA and in December 2014, the UN General Assembly adopted a resolution declaring the 13th of June each year as International Albinism Awareness Day[15].

Moreover, as person with albinism are identified as disabled people[16] they have guaranteed human rights as set out by the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD); these rights include a right to life, adequate standards of living and social protection, equality and non-discrimination, freedom from exploitation, violence and abuse, and a right to education, health, work and employment.

Conclusion

Despite the huge work that is currently carried on in Africa, especially from NGOs, people with albinism are still exposed to different risks and threats from both their relatives and community; in countering this situation is important to consider the important role played by several international organization, which play an important part in sensitizing and informing people, although old beliefs and rites are hardly abandoned by the poorest and less educated people, who think they can solve their problems by turning to sorcerers and wizards.

In order to cope to this situation, the government’s response should be guided on one hand by the best interests of the children involved, balancing the child’s protection and safety with the preservation of the family environment and the pleasure of other rights and on the other hand on the education of the population of the poorest countries of Sub-Saharan Africa through the development of new educational policies at national level, a policy which is unfortunately often not pursued by governments.

Bianco Nicola

[1] Melanin is a natural skin pigment produced by melanocytes that determines hair, skin, and eye color in people and animals. Source: Webmd.com, https://www.webmd.com/a-to-z-guides/what-is-melanin#1

[2] cells in the retina that detect light

[3] Nystagmus is a vision condition in which the eyes make repetitive, uncontrolled movements. Source: Aoa.org, https://www.aoa.org/patients-and-public/eye-and-vision-problems/glossary-of-eye-and-vision-conditions/nystagmus

[4] Source Aljazeera.com, https://www.aljazeera.com/indepth/interactive/2017/04/albinism-170424053209871.html

[5] Source: Standingvoice.com, http://www.standingvoice.org/albinism

[6] Source: Un.org, https://www.un.org/en/events/albinismday/

[7] Source: Insideover.com, https://www.insideover.com/society/the-albinos-born-with-targets-on-their-heads.html

[8] Source: Sbs.com, https://www.sbs.com.au/topics/voices/culture/article/2016/06/13/people-albinism-africa-are-being-hunted-body-parts

[9] Source: Aljazeera.com, https://www.aljazeera.com/indepth/interactive/2017/04/albinism-170424053209871.html

[10] the UN agency that deals with human rights issues

[11] Source: Un.org, https://www.un.org/africarenewal/magazine/december-2017-march-2018/ending-albino-persecution-africa

[12] Source: Albinofoundation.org, https://albinofoundation.org/albinism-in-africa/

[13] Source: Hrw.org, https://www.hrw.org/news/2019/02/09/it-felt-punishment-growing-albinism-tanzania

[14] Source: Europarl.europa.eu, https://www.europarl.europa.eu/doceo/document/B-8-2017-0547_EN.html

[15] International days are occasions to educate the public on issues of concern, to mobilize political will and resources to address global problems, and to celebrate and reinforce achievements of humanity https://www.un.org/en/events/albinismday/

[16] Disability specifically refers to negative interactions between people with deficiency and the internal and external environment; it’s the umbrella term for impairments, activity limitations and participation restrictions, referring to the negative aspects of the interaction between an individual (with a health condition) and that individual’s contextual factors (environmental and personal factors)https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5767025/

For further information:

http://www.standingvoice.org/albinism

https://www.aljazeera.com/indepth/interactive/2017/04/albinism-170424053209871.html

https://www.underthesamesun.com/content/issue

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5767025/

https://www.thelancet.com/journals/lanchi/article/PIIS2352-4642(19)30206-8/fulltext

https://www.sbs.com.au/topics/life/culture/article/2016/06/13/people-albinism-africa-are-being-hunted-body-parts

https://www.un.org/africarenewal/magazine/december-2017-march-2018/ending-albino-persecution-africa

https://albinofoundation.org/albinism-in-africa/