From the shadows to the spotlight - Addressing the plight of women and girls with albinism
Author: Chisomo F Kaufulu

As the world commemorates International Albinism Awareness Day on 13 June, it must be borne in mind the various hindrances and systemic barriers that prevent the full, equal and active participation in society of people with albinism.[1]Though albinism is a genetic condition in which a person lacks the gene for producing melanin, the ‘physical appearance of persons with albinism is often the object of erroneous beliefs and myths influenced by superstition, which foster their marginalization and social exclusion.’[2]Thus, there is gradual increasingrecognition that people with albinism experience a range of barriers to education, health care and other basic services as well as entrenched stigma and targeted attacks. However,there is limited awareness regarding the adverse consequences of disablement that are particularly pronounced for women and girls with albinism.[3]Ironically, women and girls with albinismface heightened risk as well as other intersecting and multiple forms of discrimination.[4]This includes stigmatization and social exclusion as well as the “severe threats to and attacks on their physical integrity, which include ritual killings, abductions, mutilation and sexual abuse”.[5]Albinism therefore adds to the disadvantage customarily experienced by women and girls in various sectors of society[6] and heightens the barriers that women and girls face in order to attain full equality in society,[7] as well as their participation in community life.[8] This makes such women the victims of a ‘two-fold discrimination’: as women on one hand, and as disabled persons, on the other hand.[9]’As rightly observed by the former Special Rapporteur of the Sub-Commission on Prevention of Discrimination and Protection of Minorities, ‘sex and disability are two separate factors which, when combined in the same person, usually reinforce each other and compound prejudices.’[10]

It is encouraging to note that international and regional human rights systems are increasingly recognizing this double-fold discrimination that women and girls with disabilities (including albinism) face. For instance, article 6 of the Convention on the Rights of Persons with Disabilities recognizes that women and girls with disabilities are subject to multiple discriminations. Similarly, the Maputo Protocol (Protocol) recognises that certain women suffer multiple forms of discrimination and thus the Protocol rightly accords separate and specific provisions of protection of the rights of women with disabilities. However, though discrimination against women is generally recognized and has been the subject of numerous scholarly research, there is less pronounced attention and analysis to adequately uncover the specific discriminatory context and vulnerabilities faced by women and girls with disabilities (and albinism, in particular) in order to inform strategic interventions.[11]The United Nations (UN) Independent Expert on the Rights of Persons with Albinism has rightly observed that, ‘women with disabilities are invisible both among those promoting the rights of persons with disabilities, and those promoting gender equality and the advancement of women.[12]’ Thus, the recently adopted Resolution on Persons with Albinism in Africa by the Pan African Parliamentacknowledgesthat systematic attacks against persons with albinism have a disproportionate impact on women and the failure of law enforcement agencies to promptly and effectively investigate and prosecute perpetrators of these attacks. To illustrate, there have been numerous reported incidents amongst women and girls with albinism within the African continent and across the globe who have been victims of systemic acts of sexual violence, incited by superstitious and mythological misbeliefs that sexual intercourse with a woman with albinism can cure HIV/AIDS or bring good fortune.[13] It is also common for mothers of babies with albinism to face societal ostracism and ridicule.[14] Cases have also been reported in which mothers of children with albinism have been subjected to physical harm on ill-founded claims that such babies are a curse or a bad omen.[15] The ostracism of mothers of children with albinism not only exposes them to a perpetual cycle of poverty and isolation but also increases the vulnerability to attacks of both mother and child with albinism,[16] since a significant number of attacks tend to occur on those who are removed or isolated from the community.[17]Women and children with albinism constitute a significant number of people with albinism in displaced settings/temporary shelters where minimal care is rarely available.For instance, an early assessmentby UNICEF of temporary shelters housing people with albinism in Tanzania reveals that such environments enables abuse of multiple forms on both the women and the children.[18]

In line with the Regional Action Plan on Albinism in Africa (2017-2021) which lays out specific measures for addressing attacks and discrimination against persons with albinism, state parties need to take special cognition of the rights and welfare of women and girls with albinismand integrate a gender perspective in all policy-making and programming oninterventions targeting people with albinism.It is therefore important that states collect sex-disaggregated data to capture the multiple and intersecting forms of discrimination that women with albinism face for purposes of advocacy and gender-responsive programming.In addition, it is also important to understand that women and girls with albinism are not a homogenous group. There are evidently varying factors that also increase the vulnerability of different women and girls with albinism, such as geographic location, level of education, employment, household income, marital relationships, access to political and civic participation, HIV status, age, ethnic identity and sexual orientation. Thus, there must be deliberate and explicit recognition of the different life experiences of women and girls with albinism, in areas of both public and private life.