International Albinism Awareness Day
Posted on: 13 June 2022 by Chisomo Kaufulu in Blog
On 18 December 2014, the United Nations General Assembly adopted resolution 69/170, proclaiming 13 June as International Albinism Awareness Day. In this blog, PhD student Chisomo Kaufulu discusses ways that states can attain substantive equality for people with Albinism.
What is Albinism?
Albinism is a genetic condition which reduces the amount of melanin pigment formed in the skin, hair and/or eyes of a person. As a result of low melanin, the complexion of persons with Albinism appears very light or fair. The absence of melanin also results in other challenges, including visual limitations as well as an increased risk of developing skin cancer due to the skin’s sensitivity to sun exposure.
What issues do people with Albinism face?
The skin complexion of persons with Albinism has been the subject of many misleading beliefs, myths and superstitions which has perpetuated their marginalization and social exclusion. For example, women who give birth to children with Albinism often face ridicule, stigmatization and blame by their husbands and/or families for supposedly passing the condition to their children- even though it is an established medical fact that both parents must carry the gene to pass it onto their children. Such blame also overlooks the fact that Albinism is not a natural state of inferiority or insufficiency that warrants the assignment of blame to parents who bear children with Albinism. There are also reported incidences of babies born with Albinism being abandoned by their parents due to their condition- including instances in which babies with Albinism have become victims of infanticide. In addition, hundreds of reported attacks targeted against persons with Albinism (which are premised upon myths and stigma) are prevalent in various countries. As a result of these deeply entrenched stereotypes, prejudices, and stigma, persons with Albinism face structural barriers that limit their meaningful access to socio-economic opportunities- including employment, entrepreneurship, health care, social and justice services. Thus, persons with albinism have and continue to constitute those “left furthest behind.”Whilst there has been increasing attention to the rights and needs of persons with Albinism in recent years, much work remains to be done in order to achieve substantive equality.
Attaining substantive equality for persons with Albinism
In order to attain substantive equality, States need to be cognizant of any direct or indirect discrimination perpetuated through laws, policies and practices that inhibit persons with Albinism from fully enjoying their rights. Direct discrimination occurs when there is explicit discrimination in the treatment of persons with Albinism; whilst indirect discrimination occurs in instances where a law or practice may appear to be neutral on the face of it but has a discriminatory effect in practice on persons with Albinism. Due to pre-existing inequalities faced by persons with Albinism, States need to accelerate the implementation of special measures to obtain de facto equality for persons with Albinism across various socio-economic indicators. In addition, persons with Albinism are not a homogenous group. There are various factors that may increase the vulnerability of persons with Albinism, such as sex, geographic location, level of education, race etc. States therefore need to ensure that they implement deliberate measures to cater for intersectional forms of discrimination that persons with Albinism may face in both their public and private life. In recognition of prevalent stigma against Albinism in various societies, States also need to upscale multi-sectoral and concerted efforts to displace negative socio-cultural norms and beliefs relating to Albinism. Lastly and based on the mantra ‘nothing about us without us,’ targeted efforts need to be enhanced to ensure that safe platforms exist for persons with Albinism to build their self-agency- including through meaningful participation in matters that they themselves consider as essential.