Formulate policies to protect us, Persons with albinism call on government

Persons with albinism have called on the government to formulate policies that would protect their rights in hostile communities.

The albinos say enactment of such policies will protect them from people who are calling them ghosts and subjecting them to extreme forms of persecution and human rights violations, ranging from widespread societal discrimination, verbal abuse, exclusion from public services, killings, abductions, and rape.

Shamimu Logose 18, a resident of Nabiganda village Kachonga sub-county in Butaleja district says calling them names like ghosts, and ‘’Nyamagoya’’ has deprived them of freely enjoying a social life.

She revealed that students with albinism face additional forms of discrimination and are prevented from equal access to education, either directly or indirectly, from both peers and teachers.

‘’I feel hurt when I am walking then people start calling me ‘’nyamagoya’’ as if I don’t have a name, and sometimes begin staring and laughing at you’’ she narrated

People should treat us like normal people other than taking us as outcasts in society.

Derick Nanjekhe,18, from Wokuri village Mbale district said people with albinism have been neglected from government programs

‘’Whenever they are giving animals, seedlings and other inputs we are always left out yet we are normal and capable’’

He said sometimes they are denied the opportunity of getting spouses for marriage yet they also have feelings.

Gabriel, a father with a one-year-old boy with albinism said it's expensive to cater to the child’s basic needs sometimes a change in the environment affects the eyes thus the need to see an eye doctor so often.

These remarks were made on Saturday 29th.May .2021 at Merikit health center three, Merikit sub-county Tororo district during a medical camp for persons living with albinism.

The medical camp which started with running was organized by Every Child Ministries Uganda, in pursuit of its mission of offering hope, practical help, and dignity to Ugandan children and their families in Jesus' name.

The medical camp which attracted several dozens of persons with albinism across Bukedi, Bugisu, and Teso Subregions was partly intended to commemorate the upcoming national day of albinism awareness next month on13^th. June 2021. under the theme strength against all odds.

Services that were offered included eye clinic, skin and cancer screening, physiotherapy, HIV testing and counseling, general body checkup among others.

Members also received sunscreen lotions and mobility devices for the disabled members.

Emma Mutema the coordinator of Hope Union of persons with albinism (HUPA) in north Bukedi says There is nothing wrong in having an albino appearance, it is God’s plan for which we have no control.

According to Mutema, it's unfortunate that Men have a belief that when they sleep with an albino woman, they get cured of HIV/Aids. In the process, these women acquire sexually transmitted diseases besides getting unwanted pregnancies.

This not only leaves the victims struggling to get medication but also raising children as single parents.

Every life is sacred and therefore it should be integrated into the family, society without intimidation or discrimination.

‘’People who suffer from generic conditions should not be isolated from their families or societies in which they live. It is important to note that a child with albinism is able to flourish like any other child, they can achieve the same education and employment as a person without this condition’’ he said.

Mr. Brian Mukalazi the country director, Every Child Ministries Uganda noted that the health camp idea was adopted in 2019 after realizing that many persons with albinism were marginalized and lacked access to basic medical care as most of them do not have the knowledge or money needed to access health services.

He noted that more than 95% of the PWAs die before the age of 40 mostly due to skin cancer.

Mukalazi observed that the challenges faced by the PWA cannot be addressed within the existing legal framework in Uganda where, PWAs are generally categorized as Persons with Disabilities (PWDs) under The Persons with Disabilities Act, 2006.

He called for the involvement of all stakeholders to come and promote the rights of PWAs, informing and educating the population as one way to demystify the myths and prejudices about albinism.

About albinism

Albinism is a congenital disorder characterized in humans by the complete or partial absence of pigment in the skin, hair, and eyes.

It is associated with a number of vision defects such as photophobia (intolerance of light) and nystagmus (a vision condition in which the eye fails to achieve normal visual activity).

In Uganda as of July 2020, it is estimated that there are over 250,000 people with albinism according to Africa Albino Foundation.