Human Rights Approach to Albinism – Promoting and Protecting the rights of Persons with Albinism in South Africa

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By: Kamohelo Teele

13 June International Albinism Awareness Day

The drafters of both the Interim and final constitution have failed to adequately deal with Disability question as a basis, premise and foundation of our very same constitution deemed to be the best in the world. The preamble of the RSA Constitution, founding values, Bill of Rights, Section 9 Equality clause and Section 10 dignity clause including all other legislations remains fictitious and does not address the grassroots challenges and aspirations of people with Albinism.

Persons with Albinism continues to experience the worst form of subjugation, they are brutally attacked daily, they experience discrimination, stigma and marginalization within family setting, in their communities, schools, within the professional space and are projected as inadequate. The stigma they face is both concealed and unconcealed.

The United Nations theme for International Albinism Day 2023 is INCLUSION IS STRENGTH. The theme expands on last year’s theme of include the voices of people with albinism in all aspects of life. It underlines the significance of including a diverse range of groups both within and outside the albinism community.

– Involving a diverse range of people with albinism in albinism-related debates, including youth, women, children, older people, LGBTQ+ people, and people with albinism of all races and ethnicities.

– Working with and embracing albinism within the disability movement and other sectors where decisions affect people with albinism; and – Seeking synergies with human rights organizations and other groups outside the albinism movement.

History of International Albinism Awareness Day

The United Nations General Assembly passed a resolution on December 18, 2014, designating June 13th as International Albinism Awareness Day. This historic decision underscored the global importance of albinism advocacy. NOAH joins the global albinism community in encouraging everyone to celebrate and raise awareness of albinism on June 13th each year.

Yusuf Mohamed Ismail Bari-Bari, the late Ambassador of Somalia to the United Nations in Geneva, led the drive to adopt the resolution in collaboration with Under the Same Sun, an organization that promotes and protects the rights of persons with albinism, particularly in Africa. NOAH then attended a United Nations “side event” to commemorate the resolution’s adoption.

The late Excellency Bari-Bari delivered opening and closing remarks at the event, including sharing a narrative with Pope Francis about horrors committed against people with albinism in Africa. Many other luminaries were present as well, and each made a brief statement in support of the resolution. Representatives from the United Nations delegations from Italy, Israel, Canada, and the United States were among those there, as was the U.N. Special Representative on Violence Against Children, a representative from UNICEF, and numerous significant persons from the albinism community.

UN Convention of the Rights of Persons with Disabilities 2007

The CRPD is an international human rights treaty of the United Nations. It focusses on the protection and promotion of the rights of persons with disabilities. Before the CRPD was established, persons with disabilities were not expressly protected and recognised in binding international human rights instruments. For example, the equality clauses in the major human rights treaties in existence at the time did not include persons with disabilities as a protected category.

To fill this void, the United Nations established an ad hoc committee to consider drafting and enacting a human rights instrument with disability as its specific focus. Negotiation during eight sessions of the ad hoc committee led to the adoption of the CRPD and an associated Optional Protocol on 13 December 2006. South Africa ratified the CRPD and the Optional Protocol on 30 November 2007. The CRPD officially came into force on 3 May 2008.

Prior to the adoption of the CRPD, disability was viewed within the paradigm of the “medical model of disability” which takes the view that a person’s disability is a medical problem or illness that requires a medical solution or cure. The CRPD moves away from this paradigm and adopts a human rights model. The human rights model sees the CRPD viewing persons with disabilities as subjects and rights holders.

L25 Declaration

1. Urges States to take all measures necessary to ensure the effective protection of persons with albinism, and their family members.

2. Calls upon States to ensure accountability through the conduct of impartial, speedy, and effective investigations into attacks against persons with albinism falling within their jurisdiction, and to bring those responsible to justice, and to ensure that victims and family members have access to appropriate remedies.

3. Also calls upon States to take effective measures to eliminate any type of discrimination against persons with albinism, and to accelerate education and public awareness-raising activities.

4. Encourages States to share best practices in protecting and promoting the rights of Persons with Albinism.

5. Invites relevant special procedures of the Human Rights Council, as appropriate, in the framework of their mandate, to address the relevant aspects of the safety and non-discrimination of persons with albinism.

6. Invites States, in collaboration with relevant regional and international organizations, to promote bilateral, regional, and international initiatives to support the protection of persons with albinism.

7. Requests the Office of the United Nations High Commissioner of Human Rights to submit a preliminary report on attacks and discrimination against persons with albinism to the Human Rights Council at its twenty-fourth session.

RSA Constitution, 1996

South Africa is a sovereign constitutional democratic state governed amongst others by the supremacy of the Constitution and the rule of law, promotion of human rights, dignity (Section 10) and Equality in the Section 9 of the constitution. The RSA Constitution has the bill of rights as the cornerstone of our democracy, it enshrines the rights of all citizens including Persons with Albinism and affirms democratic values of human dignity, equality, and freedom. The state has an obligation to protect and fulfil the rights stated in the bill of rights. The bill of rights applies to all law and binds the legislature, the executive and the judiciary including all organs of the state.

The current discussion has at its core the fundamental human rights of every person and, in this case, specifically persons with disabilities. As such it goes without saying that the underlying foundation to this discussion relates to the values and principles enshrined in the Constitution of the Republic of South Africa, 1996. On 8 May 1996, the Constitutional Assembly adopted the current Constitution of the Republic of South Africa, which commenced on 4 February 1997. The Constitution is the Supreme law of South Africa.

Moseneke J emphasized the importance of the Constitution in S v Thebus, saying, “Since the advent of constitutional democracy, all law must conform to the command of the Supreme law, the Constitution, from which all law derives its legitimacy, force, and validity.”

As a result, any law enacted prior to the Constitution’s entry into force is only binding and valid to the degree of its constitutional consistency. The Bill of Rights establishes essential rights for all people to enjoy. The State must respect, preserve, promote, and fulfil the rights enshrined in the Bill of Rights, subject to the restrictions outlined in Section 36. The protected rights enshrined therein apply to all laws and bind all state authorities, including the court.”

Section 7(1) of the Constitution enshrines all people’s rights to human dignity, equality, and freedom. Section 9(1) of the Constitution, which stipulates that everyone is equal before the law and has the right to equal protection and benefit of the law, is particularly relevant to the current topic. Section 9(3) states that the state may not discriminate against anyone on one or more grounds, including disability, either directly or indirectly.

According to Section 10, everyone has inherent dignity and the right to have their dignity respected and preserved. Section 12 of the Constitution addresses the right to personal freedom and security. Section 12(1)(c) says unequivocally that everyone has the right to be free of all types of violence, whether from public or private sources. Subsections 12(1)(d) and (e) safeguard all persons against torture in any form or from being treated or punished in a cruel, inhuman, or humiliating manner. It is critical to remember that no right under the Constitution is absolute and can thus be reduced. Section 36 of the Constitution establishes the standards for determining when a certain Bill of Rights right may be curtailed.

White Paper on the Rights of Persons with Disabilities 2015

White Paper on the rights of Persons with Disabilities is a comprehensive and detailed policy document which was adopted by the cabinet on the 9th of December 2015. It has 9 strategic pillars and designed to provide mainstreaming trajectory for the realization of rights for Persons with Disabilities in South Africa through the development of targeted interventions that remove barriers and apply the principle of universal design. The policy document along with its implementation matrix serves as a framework for disability policy implementation and this includes Persons with Albinism. All oversight institutions, government institutions, judiciary, private sector, media, policy makers have an obligation to align themselves with this policy document. White Paper on the Rights of Persons with Disability is incorporated as part of the National Development Plan with the timeframe of 15 years.

Right to Economic participation

The provision of equitable economic rights is at the heart of economic justice. Economic rights are also fundamental to economic policies, strategies, and programs. To exercise one’s economic rights, one must be able to actively participate in economic processes and activities while maintaining one’s human dignity and self-sufficiency. Access to resources such as land, finance capital, good work, capital infrastructure, and labour are all examples of economic rights. Realizing people’s economic rights provides them with the means to meet their basic human requirements autonomously, with dignity and self-respect.

Economic justice seeks to provide possibilities for all people to attain economic and financial independence in order to live a dignified, productive, and creative life, as well as to minimize income disparities. Economic rights, like social rights, can be granted to all people with disabilities using the social model and mainstreaming method. On a practical level, this means that people with disabilities must be involved in conceptualizing, planning, implementing, and monitoring economic development policies and programs, among other things. They must also be considered when programs and projects are planned (as beneficiaries and implementers), and any barriers to participation in the mainstream economy must be removed.

Mainstreaming a “Rights Based Approach”

A human rights approach offers the context for human development activities. The emphasis on human rights adds two crucial values to development work: first, it gives a framework for policies and programs, and second, it empowers the poor to demand accountability in order to eradicate poverty. Strengthening vulnerable communities’ capacity to enforce their rights is especially important when power imbalances exist, as imbalances can result in unfair policies that prioritize the interests of one group over another, or abuses of power (for example, corruption, child trafficking, or domestic violence).

This can make people more vulnerable to poverty. A human rights strategy strives to increase people’s power to demand accountability in two ways: first, by defining a minimum scope of valid claims (human rights), and second, by improving accountability institutions and processes that defend these claims (such as the legal system).

Participation, responsibility, non-discrimination, empowerment, and an explicit relationship to human rights principles are all components of mainstreaming. Progressive realisation requires states to commit to fulfilling immediate rights by allocating finances for the realization of fundamental human rights. This can be accomplished over time by ensuring that programs targeted at increasing citizens’ quality of life are sufficiently budgeted for.

The Preamble to the Constitution pledges South Africa to achieving social justice and improving the quality of life for all, declaring “human dignity, the achievement of equality, and the advancement of human rights and freedoms” to be our society’s foundational values.

The Constitution establishes the essential legal basis for South African participatory democracy. It accomplishes this by establishing a set of rights such as the right to free expression, assembly, demonstration, picketing, petitioning, and voting. Participation in Ward Committees, Workplace Forums, Integrated Development Planning (IDP) Processes, Chapter 9 Institutions, and the National Economic Development and Labour Council are examples of notable types of participatory democracy.

The freedom to participate is enshrined in the South African Constitution and various international treaties. The Special Rapporteur on extreme poverty and human rights has focused on people living in poverty’s right to participate, declaring that “participation is a basic human right in itself, a precondition or catalyst for the realization and enjoyment of other human rights, and of fundamental importance in empowering people living in poverty to confront inequalities and power asymmetries in society.”

Kamohelo Teele is serving in the Disability Advisory Committee (DAC) of the South African Human Rights Commission. He writes on his personal capacity.


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