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“PALOP” Conference and Training on Albinism: Progress, Challenges and Way Forward

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“PALOP” Conference and Training on Albinism: Progress, Challenges and Way Forward Ministry of Justice, Constitutional and Religious Affairs Report of the “PALOP” Conference and Training on Albinism: Progress, Challenges and Way Forward Maputo, 27-29 December 2019 Seating from left to right: Ms. Andrea Wojnar, UNFPA Rep. to Mozambique, Mr. Albachir, National Director of Human Rights, Ms. Ikponwosa Ero, UN Independent Expert on Albinism, Mr. Lucas Mangrasse, the Vice - Minister of Gender Children and Social Action, Mr. Paul Gomis, UNESCO Rep. to Mozambique, Mr. Marcoluigi Corsi, UNRC a.i. and UNICEF Rep. to Mozambique, and some participants. The opinions expressed in this report are those of the author and do not necessarily reflect the views of UNESCO. The designations employed and the presentation of material throughout the report do not imply the expression of any opinion whatsoever on the part of UNESCO concerning the legal status of any country, territory, city or area, or of its authorities, or concerning its frontiers or boundaries. _____________________________________ Publisher : United Nations Education, Scientific and Cultural Organisation 204, Frente de Libertaçao de Moçambique road Maputo, Mozambique Tel . : +258 21481700 Webiste : https://en.unesco.org/fieldoffice/maputo __________________________________________ © 2020 United Nations Education, Scientific and Cultural Organisation (UNESCO) 2 Map of Mozambique Source: Moçambique: evolução da Toponímia e da Divisão Territorial 1974 - 1987 3 Table of contents Map of Mozambique 3 Table of contents 4 Acknowledgements 5 Executive summary 6 Acronyms and Abbreviations 8 Introduction 9 1. Definitions 11 2. Albinism in PALOP Countries 3 3. Rights of Persons with Albinism in Africa: progress and challenges 9 3.1. Adoption of the UN Convention on the Rights of Persons with Disabilities 9 3.2. Creation of the position of UN Independent Expert on the Enjoyment of Human Rights by Persons with Albinism 11 3.3. Adoption of the Regional Action Plan on Albinism 13 3.4. Adoption of the Mozambican Multisectoral Action Plan on Albinism 14 3.5. Media and Albinism: progress and challenges 15 3.6. Education and Persons with albinism 15 3.7. Health and wellbeing of Persons With albinism 16 4.1. Conclusion 18 4.2. Recommendations 19 4.2.1. Education system must be inclusive 19 4.2.2. Provision of health-care tailored to the needs 19 4.2.3. Adoption of a national action plan on albinism 19 4.2.4. Establishment of a PALOP network on Albinism 20 4.2.5. Research and Data collection and analysis 20 4.2.6. Capacity Building and Development of Stakeholders 20 4.2.7. Coordinated, Advocacy and campaign 21 4.2.8. “Twin-Track” Approach 22 4.2.9. Multi-Sectoral Approach 22 4.2.10. Context-Specific Interventions 22 4.2.11. Gender Approach 23 4.2.12. More Active Media 23 4.2.13. Attitude and Behaviour Change 23 4.2.14. Partnership Development and Resource Mobilisation 23 5. Moving forward 25 Annexes 26 I. Opening Remarks of the Vice-Minister of Gender Children and Social Action 26 II. Programme of the Conference and Training 26 III. Presentations 26 4 Acknowledgements UNESCO, the Ministry of Justice, Constitutional and Religious Affairs (MJCR), in partnership with the Open Society Initiative for Southern Africa (OSISA), the UN Independent Expert on the Enjoyment of Human Rights by Persons with Albinism (IE), Ms. Ikponwosa Ero, Ford Foundation, the Office of the High Commissioner for Human Rights (OHCHR), The United Nations Fund for Population (UNFPA) and the International Organisation for Migration (IOM) would like to thank the many individuals, Civil Society Organisations (CSOs), members of PALOP governments, as well as representatives of UN agencies in Mozambique, the medias and NGOs who successfully participated in the conference and training and contributed to this report. They provided their presentations during the conference, notes, comments and constructive critics that are reflected here. The organizers would like to acknowledge the contributions that came from the report of the Ministry of Justice Constitutional and Religious Affairs. Moreover, UNESCO, the MJCR and the United Nations Independent Expert on the Enjoyment of Human Rights by Persons with Albinism (IE) are most grateful to all persons with albinism who sacrificed their time and shared their experiences and opinions during the Conference and Training. Their contributions were key in understanding albinism and to the writing of this report. Finally, UNESCO would like to express its gratitude to government staff, the UN colleagues for the time and efforts they invested in facilitating the logistics and for the writing of this report. 5 Executive summary The sharing of ideas and experience throughout the Conference and Training emphasized that despite significant progress achieved at policy level, persons with albinism (PWA) continue to face developmental challenges, as well as human rights issues Figure 1: H.E. Mr Lucas Magrasse, the Vice-Minister of Gender Children and Social Action, in the middle throughout Africa, and within the Portuguese-speaking African Countries (PALOP) in particular. Their exclusion from development processes is often caused by cultural misbeliefs, inequitable access to education, healthcare and economic opportunities, which are not sufficiently adapted to their specific needs. The three days PALOP Conference and Training on Albinism, which brought together diverse stakeholders, shared grounded experiences and good practices, revealed progress achieved so far, remaining challenges and made recommendations on strategies to address the pressing developmental and human rights issues affecting PWA. The remaining obstacles cannot be addressed in an isolated manner. Stakeholders should structure, position themselves, act in a way that makes the most out of their capacity, and be champions of the cause globally, and amongst the PALOP in particular, said Mr. Paul Gomis, the Representative of UNESCO to Mozambique. He further stressed the vital and urgent need to adopt an inclusive approach to address the multidimensional nature of albinism. Access to ‘competitive inclusive quality education’ and healthcare, but also protection and human rights, changes in cultural beliefs and improvement of the global governance are paramount for the required transformative change that will enable PWAs and persons with disability (PWD) to take charge of their lives and fully participate in the sustainable development of their communities. Capacity building and development of stakeholders, in-depth research and gender-based data collection, resource mobilisation and advocacy at all levels and awareness- raising campaigns are among key recommendations that resulted from the Conference and 6 Training. Gender relations and cultural practices, ideology, behaviour and attitudes toward PWA are decisive in effecting change. The global south’s CSOs must take the lead in voicing the concerns of PWA to shape decision-making processes. Governments should be proactive in ensuring that legal framework are in place and enforced, and that policy and legislation complies with international and regional human rights instruments. This conference was a milestone toward a more systematic and integrated intervention to advance the human rights of PWA. As a crucial head start, PALOP member states should adopt an action plan on albinism inspired by the Regional Action Plan, 2017-2021, and build a network to mobilise more resources for coordinated and collective action. 7 Acronyms and Abbreviations AAAA: Angolan Association of Person with Albinism ADRA: Adventist Development and Relief Agency AU: African Union CRPD: Convention on the Rights of Persons with Disability CSOs: Civil Society Organisations CWA: Children with Albinism EAF: Edelmiro Antonio Foundation FAO: Food and Agricultural Organisation of the United Nations IE: United Nations Independent Expert on the Enjoyment of Human Rights by Persons with Albinism INGO: International Non-Governmental Organisations IOM: International Organisation for Migration MJCR: Ministry of Justice, Constitutional and Religious Affairs NAP: National Action Plan on Albinism NGO: Non-Governmental Organisation OHCHR: Office of the United Nations High Commissioner for Human Rights OSISA: Open Society Initiative for Southern Africa PALOP: Portuguese- speaking African Countries (Países Africanos de Lingua Oficial Portuguesa) PWA: Persons with Albinism PWD: Persons with Disability RAP: Regional Action Plan on Albinism SDG: Sustainable Development Goals UN: United Nations UNDP: United Nations Development Program UNESCO: United Nations Educational, Scientific and Cultural Organisation UNFPA: United Nations Population Fund UNHRC: United Nations Human Rights Council UNICEF: United Nations Children’s Fund UPR: Universal Periodic Review UTSS: Under the Same Sun 8 Introduction Under the leadership of the UNESCO Mozambique, and in cooperation with the Ministry of Justice, Constitutional and Religious Affairs (MJCR), the Open Society Initiative for Southern Africa (OSISA), the UN Independent Expert on the Enjoyment of Human Rights by Persons with Albinism (IE), Ms. Ikponwosa Ero, Ford Foundation, the Office of the Figure 2: Mr. Paul Gomis, The UNESCO Representative to Mozambique, opening the Conference and Training. High Commissioner for Human Rights (OHCHR), the United Nations Population Fund (UNFPA) and the International Organization for Migration (IOM), the Portuguese- speaking African Countries (PALOP)1 Conference and Training on Albinism took place in Maputo, from 27th to 29th of November 2019. It resulted
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