Prof. Sirkku K. Hellsten University of Dar es Salaam and University of Helsinki

1. Disability in the Global South –minority rights issue and much morethe case of Albinos in Tanzania Prof. Sirkku K. Hellsten University of Dar es Salaam and University of Helsinki

2. Three main topics • The concept of disability: its interpretation, contextualization and relativity • The complexity of the human rights discourse in relation to the protection of rights of the people living disability • To bring wider attention to the human rights violations at various levels against Tanzanians living with albinism

3. Disability • a physical or mental condition that limits a person's movements, senses, or activities; participation in social life • condition, disorder, affliction, ailment, complaint, illness, malady, disease; • a disadvantage or handicap • diversion from (what is considered) ’normal’(WHO) – international classification of functioning, disability and health (ICF) http://www.who.int/classifications/icf/en/ • "the lived experience" of people in their actual context/the 'current environment‘ • Foucault: biopolitics

4. Disability and (Global) Justice • Injustice, inequality, inequal treatment • Participation, distribution of resources, access to social and political goods • International classification, standards, human rights agenda, cooperation • Cultural differences and system of belief related to health, illness, normality, and disability • Disrespect and distributive inequity • Special treatment and affirmative action

5. International HR instruments, equality and respect for all • UDHR – all humans have equal rights 1948 • ICCPR and ICESCR 1966 • CEDAW – Convention on the Elimination of All Forms of Discrimination Against Women 1979 • Declaration of the Rights of Disabled Persons 1975 • Convention of Rights of People with Disabilities (CRPD), 2007 • Indigenous Peoples Rights Act 1997; • Declaration on the rights of indigenous peoples 2007

6. Global South, Disability, and Human Rights • WHO: Around 15 % of world’s population (est. 1 billion) people live with disabilities. • World’s largest minority. • Numbers increasing: population growth, ageing, medical advances, climate change, etc. • 80% of PwD in developing countries (UNDP) • Vulnerability: the poorest, women and girls, people otherwise already disadvantaged, marginalized • Lack of education (90% not attending the school in the global South); unemployed, lack of political representation, medical attention

7. Disability and culture • Language: positive and negative connotations • World view and belief system: (evil) curse or special gift/recognition (by God) • Attitudes: depend often on the traditions, beliefs and social values • Historically (even) in the West: Plato - deformed offspring of both the superior and inferior ’classes’ be put away some ’mysterious unknown places’

8. Global South: Approaches to Disability in Africa • Attitudes, beliefs, traditions: spiritual world view (religion/withcraft); special significange of body parts, mental capacity, and obidience to social norms (spiritual healing: priests or witch doctors) • Shame, fear, ignorance, contempt vs.respect, community care • Development aid and International Conventions and programmes ->new approaches • Not always co-inciding – attitude change, awareness raising • Education for the disabled and the wider public

9. HUMAN RIGHTS APPROACH: Philosophical foundations: individual rights based on moral agency and equal worth and dignity of all human beings • Individuals’ worth, universal, inviolable • Cultural criticism from the Global South: Individualistic, atomistic, Western originated and culturally biased, not practical, cultural imperialism • Cultural interpretations: African, Asian, Islamic, etc. approaches to human rights – in common more collectivist and culturally embedded understanding – already based on appeal to sensitivity towards cultural difference

10. Equal rights –> equality: tools? • From negative rights protection to promotion of positive rights (from non-discrimination to enhancement) • Rights promotion – prejudice, elimination of discrimination – direct rights (which) violations ! • Discrimination –> anti-discrimination laws -> affirmative action: disadvanted groups get special treatment; special rights? • The USA and South Africa –> kick back: turning into reverse discrimination and negative attitudes? • Special rights? What are special rights? • How do special rights fit in different cultural contexts?

11. African concept of human rights African humanism and communalism: • Concept of personhood: self-realization through community, benefit to community, communal leadership and traditional authority • African traditional values of solidarity and egalitarianism; criticism of Western individualism and liberalism (hypocrisy, non-African, socially destructive) • Consensus democracy and African socialism • African Charter on Human and Peoples’ Rights (Banjul Charter 1981/86)

12. Understanding HR in TZ • TZ history – liberation humanistic ideology, African Ujamaa socialism • Hostile to individuals’ rights in post-independence era • Active in creating the African Charter • The constitution has individual and collective rights and duties • Has signed most of the international treaties, but lacking behind in domesticating or implementing them • Case study: people living with albinism – all share certain features globally speaking; but face different challenges in different cultural contexts (degree of discrimination, prejudice, rights violations, or care, attention, assistance, etc.)

13. Discrimination of People with Albinism (PwA) – a double jepardy

14. UN, EU call for better protection of the rights of albinos and condems the killings • In Burundi, Tanzania, Kenya and Malawi the cases have increased recently • 2006 onwards 74 murders, 2013 alone several murders, 34 attempted murders, high number of mutilations in TZ • UN reports: $3,000 or $4,000 for a limb, or as much as $75,000 for the whole body • Incidents crease in election years • The clients of witch doctors are rich, the hunters poor – lacking alternative livelyhoods (?)

15. What kind of minority PwA? Disabled? • Global minority, with different conditions different parts of the world • Not ethnic, no common culture, but similar challenges and vulnerabilities • Not directly disabled per se; genetic condition that leads to disabilities – visual impairment, skin diseases, - and mutilations (environment matters) • Refugee status or seeking asylum – particular social group threatened due to persecution • Individual members rights violated since they are a part of a specific ’group’/group with specific features…

16. The reasons for discrimination of albinos are based in superstition, illiteracy, cultural beliefs, ignorance • The killing of albinos is based on superstition, ignorance, poverty, economic (and political) reasons – witchcraft • Turning into slow genocide? Albinos seen to lack full humanity • Police, relatives, politicians, neighbours involved; no security to those who identify the killers – who is going to protect? • The state does not put in full effort despite clear human rights violations; the state obligations not met

17. Government measures not convincing • International community cannot directly interfere • International law cannot be used with full force as TZ has not adopted the Optional Protocol to the ICCRP and is not willing to accpet individual complaint mechanism • CRPD and its Optional Protocal not ratified • Interpol and now UN investigation team – limited ability to deal with the crimes

18. Discrimination vs. direct rights violations/rights denial • Related issues but need different cures? • Does the concept of minority rights or disability rights, or other group rights cover both sufficently enough? • How to improve the interpretations of the concepts? • How to empower actors besides the states? The IC, INGOs, NGOs, heath care providers, ordinary citizens?

19. Conclusion • To show the complexities related to the issues of disability and global justice: interpretations, cultural environment, resrouces available, belief systems, enforcement of international standards • To further encourage disability studies to work on cross-cultural elements that need to be understood and solved in order to improve global and local conditionsof justice and make it more inclusive