Author: Satang Nabaneh
Post-doctoral Fellow, Centre for Human Rights, University of Pretoria
Discrimination and stigma relating to persons with albinism remain the norm in many Africa countries. Persons with albinism have been subjected to gross human rights violations. In some extreme cases, persons with albinism in the African region have been killed for rituals or subjected to other physical abuse. While attention has been given to the killings of persons with albinism worldwide, little attention has been given to other human rights violations they encounter while seeking social services, particularly health care services. Deep-rooted prejudices and stereotypes about persons with albinism tend to aggravate human rights violations they experience. Discrimination against persons with albinism can lead to deleterious health consequences and at the same time hinder access to care for them.
In essence, discriminatory practices against persons with albinism may aggravate their health condition and well-being and at the same time may predispose them to sexual and reproductive ill health. This is more so true for women with albinism who are in a vulnerable situation. Women with albinism are vulnerable and exposed to multiple forms of discrimination and violations of their rights such as infanticide, physical attacks, lack of access to education, unemployment, sexual violence based on myths that having intercourse with a woman with albinism cures STIs or brings good luck and lack of access to health care. Being a woman with albinism can aggravate the situation as these women encounter multi-layer of discrimination in health care setting.
Twenty-five years after the International Conference on Population and Development (ICPD) Programme of Action called on states to provide to persons with disabilities in the exercise of their family and reproductive rights and responsibilities, women with albinism continue to encounter challenges with regard to their sexual and reproductive health. The needs of women with albinism often go unmet due to lack of access to information, communication barriers, lack of accessible services and equipment, inaccessible education on sexual and reproductive health, lack of empowerment and regulated autonomy.
In some situations, healthcare providers exhibit prejudices and hostile attitudes towards person with albinism. While the attitudes of healthcare providers limit access to health to persons with albinism in general it can lead to a more devasting effects for women with albinism seeking sexual and reproductive health services. They continue to face barriers to accessing safe motherhood and reproductive health service. Many healthcare providers also have limited knowledge on albinism which for instance results in mothers of new-born children with albinism not receiving sufficient information on how to care with their children with albinism.
Initiatives that tackle sexual and reproductive health and rights issues often neglect the needs of women with albinism, thereby making them particularly vulnerable. In communities where persons with albinism are isolated, women and girls with albinism find it difficult to seek information and services relating to contraception, unwanted pregnancies, or maternal care.
While no human rights instrument specifically relates to the human rights of persons with albinism, the existing provisions in international and regional human rights instruments are applicable to them. In particular, the provisions on non-discrimination, dignity and health recognised by the Convention on the Rights of Persons with Disabilities (CRPD), African Charter on Human and Peoples’ Rights, the Protocol to the African Charter on the Rights of Women in Africa (Maputo Protocol) and the Protocol to the African Charter on the Rights of Persons with Disabilities are relevant in advancing the sexual and reproductive health and rights of women living with albinism.
The African Commission on Human and Peoples’ Rights in recent times, has begun to develop important norms to clarify states obligations regarding provisions of the African Women’s Protocol. For instance, the Commission has issued two important general comments to clarify the content of article 14 of the Maputo Protocol. Although these clarifications relate to women in general, they remain very useful in advancing the sexual and reproductive health and rights of women with albinism in Africa. Both General Comments 1 and 2 emphasise the need for African governments to ensure access to sexual and reproductive health care services to all women on a non-discriminatory basis. Furthermore, they reinforce the importance of paying more attention to the health needs of vulnerable and marginalised groups in society such as refuge women, women with disabilities (including those with albinism) and women living with HIV. In other words, African governments are obligated to eliminate discriminatory practices in access to health care services for persons with albinism, especially women with albinism.
Failure by African governments to ensure access to health care services to women with albinism will amount to a violation of the right to dignity. Dignity requires that all human beings be treated with decency and respectability. The notion of dignity is an intrinsic part of every human being, which is not subject to variation or modification
In line with their obligations under international law, African governments are required to take appropriate measures to address discriminatory practices against persons with albinism in general and women with albinism, in particular. Inclusion of persons with albinism would require mainstreaming their needs in policies, and programmes relevant to sexual and reproductive health, and a disability-specific strategy that includes developing and implementing disability-specific laws, policies, and programme activities designed for the purpose of promoting the sexual and reproductive health and rights of persons with disabilities, particularly women with albinism.
This requires committing more resources to address the health needs of women with albinism. In addition, African governments must commit to training health care providers in order to meet the specific needs of women with albinism.
Note: This post is based on research that was published recently: E Durojaye & S Nabaneh & ‘Human rights and access to health care for persons with albinism in Africa’ 7 (2019) African Disability Rights Yearbook 35-58
About the Author:
Satang Nabaneh is a Post-doctoral Fellow at the Centre for Human Rights, Faculty of Law, University of Pretoria. She is the Programme Manager of the LLM/MPhil in Sexual and Reproductive Rights in Africa (SRRA) at the Centre. Satang holds the degrees LLD and LLM in Human Rights and Democratisation in Africa from the University of Pretoria and an LLB from the University of The Gambia. Her research interests include a broad range of issues related to international human rights, women’s rights, democracy, and constitutionalism.
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