(FACICP Appreciating Albinism)
Albinism is as old as Humanity which is a genetically inherited non-contagious condition that occurs due to the lack of pigmentation (melanin) in the hair, skin and eyes of an individual at birth.
This condition often results to vulnerability to the sun and bright light. As a result, almost all people with albinism are visually impaired and are prone to developing skin cancer. For all types of albinism, both parents must carry the gene for it to be passed on to their offspring, even if they do not have albinism themselves.
In Africa where we have more individuals with dark skin colouration, Albinism in Africa as been described as a public health issue which calls for a need to raise awareness on the need for inclusion of people with albinism in all social lines. It is important to note that People with albinism faces multiple forms of discrimination globally. They seem to withdrawn from social situations to avoid being noticed and emerged more emotionally unstable with less assertive personalities than people without albinism.
Due to rejection and social biases, it becomes important to foster disability right and inclusion across all sectors. Today, 13th of June has been globally described as International Albinism Awareness Day with the theme for this year’s event “United in making our voice heard”.
The United Nations Human Rights Council adopted a resolution in 2013 (A/HRC/RES/23/13) calling for the prevention of attacks and discrimination against persons with albinism.
Many civil society organizations have responded to this important call, advocating to consider persons with albinism as a specific group with particular needs that require special attention.
Also, Family Centered initiative for challenged person (FACICP) is also rising to the call through it’s SOWD-ACE program, supported by Equal Right in Action Fund to create awareness and advocate the need for alliance building and coalition among majorly organizations of women with disabilities and the mainstream women’s group of which the Albinism cluster is well represented.
There challenges, fears and concerns were noted through the focus group discussion and other civic engagements. They call for the support of Government and other women lead initiative to address discrimination against women living with disabilities as way of fighting human right violations of all types and ensure equality;
It is also important to stress that through coalition of people with albinism, most especially the female group which are indiscriminately marginalized from time to time can now attain visibility when they come together instead of working in silos.
Through inclusive interventions, most especially access to quality health care which may be in form of regular health checks, sunscreen, sunglasses and sun-protective clothing, the live expectancy of people with albinism can increase significantly.
Albinism is still profoundly misunderstood, socially and medically. The physical appearance of persons with albinism is often the object of erroneous beliefs and myths influenced by superstition, cultural altitude which foster their marginalization and social exclusion.
All interventions and measures towards Albinism is to ensure that no one is left behind, amplifying their voices, highlighting the work being done by albinism groups and to ensure equality.
On a day like this, FACICP is joining other Stakeholders across the globe to say no to discrimination against people living with disabilities so as to achieve an egalitarian society where everybody has equal right.