International Albinism Awareness Day

On June 13th, we celebrate the International Albinism Awareness Day, by expressing concern on the attacks against persons with albinism, including women and children, which are often committed with impunity.

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10 years of International Albinism Awareness Day – collective progress celebrated, challenges remain.

- A UN expert today hailed the collective progress made in pursuing human rights for persons with albinism, since the UN General Assembly officially recognised 13 June as International Albinism Awareness Day (IAAD) in 2014. Muluka-Anne Miti-Drummond, the UN Independent Expert on the enjoyment of human rights by persons with albinism, made the following statement:

“For the past decade, we have made remarkable headway in highlighting the human rights concerns of persons with albinism – a feat that could not be achieved without the valuable partnerships and collaboration forged among persons with albinism and stakeholders who have been important allies in this endeavour.

It is apt that this year we celebrate under the theme 10 Years of IAAD: A Decade of Collective Progress. Significant strides have been made in combatting stigma, discrimination and violence experienced by persons with albinism.

In the past decade, the inclusion of persons with albinism in human rights discourse and decisions, also within the disability movement, have been encouraging to witness. However, we also recognise that the journey to a more equitable world for persons with albinism continues to be marred by significant challenges and difficulties.

Persons with albinism are still among those who are left furthest behind when it comes to the SDG promises and there is still a dire need to strengthen their protection in legislation and policies, as well as their inclusion in data collection, public awareness campaigns and representation in all spheres of society. All of these efforts contribute to debunking dangerous myths and misbeliefs that have been among the root causes of discrimination and marginalisation against them.

While we need to capitalise on the gains that have been made so far, we recognise that there is still much work to do. Ongoing prejudice, and violence against persons with albinism in various parts of the world is still concerning. I continue to receive cases of attacks and killings, often perpetuated against the most vulnerable in our societies – our children. With regard to health challenges, the struggle remains for many persons with albinism to access a simple bottle of life-saving sunscreen -- an unaffordable luxury in some regions. This indicates how much work still remains in our pursuit to alleviate the plight of persons with albinism.

Reflecting on the achievements of the past 10 years, means we must also renew our commitment to address the remaining challenges adversely impacting the rights and well-being of persons with albinism. This requires a multi-faceted approach that engages all of us – the collective – and which will require more awareness-raising, education, advocacy, legislative and policy reforms, and community engagements.

In commemorating International Albinism Awareness Day today, we celebrate the resilience, strength, and contributions made by persons with albinism to our societies -- while continuing to strive for a world where dignity, equality, and human rights are fully enjoyed by all persons with albinism.”

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Every day, people with albinism suffer serious human rights violations.

Thursday is International Albinism Awareness Day. People with albinism continue to defy odds, overcome hurdles & face injustices with resilience. They must be protected. Everywhere.

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Advocacy and Lobbying for Person with Albinism.

(a) Undertake direct public education on albinism, particularly in areas of reported attacks, in all forms, on persons with albinism. (b) Provide targeted and appropriate training on all aspects of albinism that promote the enjoyment of human rights by persons with albinism. (c) Build capacity of educators and health workers (including traditional midwives) as well as for all other relevant sectors to enhance the promotion and protection of human rights of persons with albinism.

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Deepen overall capacity-building of organizations representing persons with albinism.

(a) Promote and facilitate the establishment of formally registered and legally recognized organizations representing persons with albinism, including women and girls with albinism, families of persons with albinism, as well as strengthening existing ones at local and national levels to support the empowerment of persons with albinism. (b) Provide organizational development training on results-based management to strengthen leadership, governance, strategic planning and advocacy, resource mobilization, inclusion, networking, conflict resolution, financial management, monitoring and evaluation. (c) Take steps to engage with and meet the needs of persons with albinism, with a specific focus on those vulnerable to violence, particularly women and girls, children and those living in especially difficult circumstances.

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Education and training.

(a) Enhance access to high-quality education, skills development and training that prepares persons with albinism who can work and want to work for the jobs that exist now – and in the future. (b) Provide targeted and appropriate training on all aspects of albinism that promote the enjoyment of human rights by persons with albinism. (c) Build capacity of educators and health workers (including traditional midwives) as well as for all other relevant sectors to enhance the promotion and protection of human rights of persons with albinism.

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Access to new technologies.

(a)Promote and fund the production of affordable, available and context-based assistive technologies. (b)Ensure access to appropriate, accessible and affordable assistive technologies and ICT to ensure the independence of persons with albinism.

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Capacity for advocacy and networking.

(a) Develop advocacy and influencing skills by supporting organizations of persons with albinism and their families. (b) Plan and implement their targeted advocacy campaigns. (c) Influence development agencies, governments, multilateral agencies, nongovernment organizations, faith groups and the private sector to adopt an inclusive approach to persons with albinism in all aspects of their work. (d) Facilitate learning, fund and support exchange programmes with other partners and the broader disability rights movement as well as the civil society through sharing, visits and networking. (e) Engage non-disabled stakeholders in public and private sector spheres as an essential element in participation and empowerment processes. (f) Train legislators, from local, provincial, national, regional and continental levels, and build their capacity, knowledge and skills for effectively articulating and engaging on disability issues, including through direct collaboration with persons with albinism, organizations representing persons with albinism and organizations of families of persons with albinism and individual complaints. (g) Promote and facilitate the development and strengthening of technical capacity to enable all stakeholders to achieve the objectives, outcomes along the policy value chains of the Strategic Policy Framework.

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Participation and Leadership.

Participation of persons with albinism in public decision-making, and public and political life.

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Data and Evidence.

(a) Systematically collect, disaggregate, and disseminate all data by gender and other categories, including but not limited to the use of guidelines and recommendations provided by the Washington Group on Disability Statistics in general, and for persons with albinism in particular, and to learn from best practices in the region. (b) Carry out and fund research and evaluations to inform good practice in the promotion of human rights of person with albinism. (c) Collect and analyse disaggregated data on human rights violations against persons with albinism and on how the justice system is providing access to a fair trial and effective remedies.

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Participation and self-representation.

Involve persons with albinism in planning, designing, collating and analysing disaggregated data collection on albinism, including in decision-making and activities to combat attacks, discrimination and other human rights abuses of persons with albinism.

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Needs Assessment - Address root causes of attacks and other forms of harmful practices against persons with albinism.

(a)Conduct needs assessment (including on safety and security, socio-economic rights, integration, and reintegration needs of persons with albinism. (b)Conduct research – legal, anthropological, human rights and other forms – to address root causes of attacks and other forms of harmful practices against persons with albinism. Research should include cross-border trafficking in body parts and other violations.

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Effective legislation, policy and practices.

(a)Enactment of inclusive laws and policies that guarantee the rights of persons with albinism to participate in the political, social, economic and cultural processes and systems. (b)Develop monitoring mechanisms of laws that ensure that persons with albinism are free from exploitation, violence, abuse and cruel treatment.  (c)Strengthen the legal capacity for people with albinism to exercise their legal rights on an equal basis with others in all aspects of life.  20 (d) Adopt at the State level this Plan of Action and other international instruments that support the protection of the rights of people with albinism.  (e)Sign and ratify the Protocol to the African Charter on Human and Peoples' Rights on the Rights of Persons with Disabilities in Africa

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Improve Human Security.

(a)Enact and enforce laws that protect persons with albinism from torture, cruel, inhuman or degrading treatment or punishment to ensure that people with albinism are free from exploitation, violence, abuse and cruel treatment. (b)Establish or strengthen national mechanisms for monitoring, implementation and enforcement of laws that deal with torture, inhuman, cruel and degrading punishment or treatment of persons with albinism. (c)Adopt a law (or provisions) or policy prohibiting discrimination on the basis of “colour”.

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Strenghten Social Protection Mechanisms

(a)Support the design and implementation of inclusive social safety-net mechanisms and programmes. (b)Support economic empowerment for persons with albinism through their integration within pro-disability and other social protection programmes.  (c)Establish or strengthen monitoring, reporting and enforcement measures to track progress and ensure accountability for social protection programmes. 

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Increase resource mobilization for Persons with Albinism.

(a)Provide funding for work on albinism, including to strengthen the governance, operations and activities of organizations representing persons with albinism. (b)Allocate and monitor specific budgets to facilitate the implementation of programme interventions on albinism, with a focus on gender mainstreaming. (c)Engage bilateral donors to allocate resources towards work on albinism. (d)Lobby for adequate funding for statistical data on albinism to improve strategic planning. 

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Improve Criminal Justice for Persons with Albinism.

Promotion of equal access to justice.

(a)Investigate, prosecute and punish perpetrators and provide remedies diligently within a maximum period of 3 years. (b)Create adequately funded specialized courts with simplified procedures, staffed with adequately trained specialised personnel, to address and fasttrack issues of particular interest to persons with albinism. (c)Review, amend (state clearly that particular laws apply to persons with albinism) or repeal, and implement laws, policies and practices as necessary to ensure that persons with albinism access justice on an equal basis with others. (d)Establish free or affordable accessible and readily available legal aid and assistance for persons with albinism; and ensure that persons with albinism are aware of these services. (e)Provide support services to victims/survivors and their families without waiting for legal remedies and procedures to conclude and notwithstanding the judgement rendered from the case.

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National Action Plan on Albinism and other specific measures in consultation with persons with albinism.

Creation of post of officer on albinism in the office of the President or Prime Minister or a ministry responsible for persons with disabilities, or in any other public office.