1 Table of Contents ACRONYMS ........................................................................................................................................... 4 Chapter 1: Introduction........................................................................................................................... 5 1.1. Background .................................................................................................................................... 5 1.2. Scope of study. .............................................................................................................................. 7 1.3. Methodology ................................................................................................................................. 7 1.4. Limitations .................................................................................................................................... 8 Chapter 2: Background information on albinism ................................................................................. 10 2.1. Associated beliefs, myths and superstitions ............................................................................... 10 2.2. Stereotypes about albinism. ....................................................................................................... 12 2.3. The “evil albino” stereotype ........................................................................................................ 12 2.4. Epidemiology, health needs and prevalence rate of albinism ..................................................... 14 2.4.1. Epidemiology ....................................................................................................................... 14 2.4.2. Prevalence of albinism in the world. ................................................................................... 17 Chapter 3: International, Regional and National Legal Framework .................................................... 19 3.1. International legal framework .................................................................................................... 19 3.1.1. Universal Declaration of Human Rights ............................................................................... 19 3.1.2. International Covenant on Civil and Political Rights .......................................................... 19 3.1.3. International Covenant on Economic, Social and Cultural Rights ...................................... 21 3.1.4. Convention on the Rights of Persons with Disabilities ....................................................... 22 3.1.5. Convention on the Elimination of All Forms of Racial Discrimination ............................... 27 3.2. Regional Legal Framework......................................................................................................... 29 3.2.1. The African Charter on Human and Peoples’ Rights. .......................................................... 29 3.2.2. The African Charter on the Rights and Welfare of the Child ............................................. 30 3.2.3. The East African Policy on Persons with Disabilities .......................................................... 31 3.3. National Legal and Policy Framework ....................................................................................... 34 3.3.1. The Uganda Constitution. .................................................................................................... 34 3.3.2. The Equal Opportunities Commission Act ......................................................................... 35 3.3.3. The Persons with Disability Act .......................................................................................... 36 3.3.4. The Witchcraft Act ............................................................................................................. 38 3.3.5. The Prevention and Prohibition of Torture Act................................................................... 39 3.4. Policy framework ....................................................................................................................... 40 3.4.1. National Development Plan ................................................................................................. 40 Chapter 4: Human Rights issues affecting persons with albinism. ...................................................... 42 2 4.5. Right to equality and non-discrimination.................................................................................. 46 4.6. Right to education ..................................................................................................................... 47 Chapter 5: Findings, Concerns and Priorities....................................................................................... 48 5.1. Prevalence of albinism in Uganda. .......................................................................................... 48 5.2. Myths, superstitions and stereotypes ........................................................................................ 53 5.3. Forms of Discrimination ............................................................................................................. 56 5.4. Health issues. ............................................................................................................................. 58 5.4.1. Skin problems including cancer of the skin ......................................................................... 58 5.4.2. Visual impairment ............................................................................................................... 60 5.4.3. Lack of national health programme for persons with albinism ........................................... 61 5.4.4. Best regional practice of response to health issues of persons with albinism. .................... 63 5. 5. Education ................................................................................................................................... 64 5.5.1. Best regional practice of response to education issues of persons with albinism. ............... 68 5.6. Adequacy of national policies and laws ..................................................................................... 68 5.7. Social Support ............................................................................................................................ 73 5.8. Attacks on persons with albinism .............................................................................................. 76 5.9. Organizations of Persons with Albinism in Uganda .................................................................. 78 Chapter 6: Priority recommendations and conclusions ....................................................................... 82 6.1. Recommendations ...................................................................................................................... 82 6.1.1. Recommendations on unfounded beliefs about albinism ..................................................... 82 6.1.2. Recommendation on national statistics on albinism ........................................................... 83 6.1.4. Recommendation on Education ........................................................................................... 86 6.1.5. Recommendation on policies and laws ................................................................................ 88 6.1.6. Recommendation on Social Protection ................................................................................ 88 6.2. Conclusions ................................................................................................................................ 89 References ............................................................................................................................................. 91 3 ACRONYMS AAFU African Albinism Foundation of Uganda ACHPR African Charter on Human and Peoples Rights ASSA Association of South Africa AU Albinism Umbrella CBO Community Based Organism CCRPD Committee on the Convention on the Rights of Persons with Disabilities CEDAW Convention on Elimination of Discrimination against Women CESCR Committee on Economic Social and Cultural Rights ACHPR African Commission on Human and Peoples Rights CRC Convention on the Rights of the Child. CRPD Convention on the Rights of Persons with Disabilities ICCPR International Covenant on Civil and Political Rights ICERD International Convention on Elimination of Racial Discrimination ICESCR International Covenant on Economic Social and Cultural Rights NCD National Council for Disabilities NCDs Non-Communicable Diseases NDP National Development Plan NUDIPU National Union of Disabled Persons of Uganda OCA Oculocutaneous Albinism OHCHR Office of the High Commissioner for Human Rights SNUPA Source of the Nile Union of Persons with Albinism UBOS Uganda Bureau of Statistics UDHR Universal Declaration of Human Rights UHRC Uganda Human Rights Commission UV Ultra Violet WHO World Health Organization 4 Chapter 1: Introduction. 1.1. Background Uganda has ratified several international and regional human rights instruments that commit her to promote equality and combat discrimination. At the international level, the instruments include the following: the United Nations Charter, 1945; the International Covenant on Economic Social and Cultural Rights (ICESCR), 1966; the International Covenant on Civil and Political Rights (ICCPR), 1966; the Convention on the Elimination of Discrimination Against Women (CEDAW), 1979; the Convention on the Rights of the Child (CRC),