A perfect match of fair skin, golden hair and pink lips glow and should be idolized. ‘Persons with Albinism’ are naturally born with these features and are no less human than any person different. Instead of being idolized, they are rather ostracized in many situations.
With poor vision and skin cancer threatening their survival, they have to grapple with discrimination from persons who should rather be supporting them. This leaves persons with albinism feeling unwanted, and then breeds suicidal thoughts.
According to the 2010 Population Census, about 3 per cent of Ghanaians live with a disability. This includes persons with albinism.
What is Albinism?
Albinism is a genetic disorder that causes the skin, hair, or eyes to have little or no colour. It is characterized by little or no melanin production. Melanin is a skin pigment. It occurs in both humans and animals and is what makes hair, skin, and eyes appear darker. It is a complex polymer derived from the amino acid, tyrosine. Albinism can be inherited from parents.
Many of the people I have met with this condition have had issues with their self-image.
One of the first I have met who appeared confident and resilient to me is Prince Bayi Yahaya Kpetine, a journalist. He was different and did not show the usual low self-esteem I had seen with his colleagues.
“Growing up in a local community where you’re just the only person with albinism and you’re being told that you’re not important or insignificant as far as life is concerned was an inspiration for me to pursue my dreams and defend myself with integrity. Even with or without them it is possible that I can do whatever I want to do,” he asserted.
Bernice Agboada is also a person living with albinism. She has lived with the condition for over two decades. In a conversation with Bernice, she felt disappointed in how the agents of socialization including the church and school were unsupportive of her in her early stages of life.
Notwithstanding this seeming lack of support, Bernice will not be discouraged.
Bernice comes across as elegant and assertive. These attributes she said, were inculcated in her by her family.
In school, due to her poor vision, she had to walk so close to the board to properly see during lessons and tests. This attracted verbal assaults from colleagues, with words such as ‘if you can’t see go to the school of the blind’.
She whined that “people say when you use a person with albinism for money rituals it is extraordinary, so when someone is approaching you, you think about all these misconceptions and you don’t give the chance to be loved.”
In a family of seven, Bernice is the third child with the condition. Her two elder brothers are persons with albinism, however, her younger siblings do not have the condition. They have dark skins. Yes, you can call them a family of many colours just like Dolly Parton’s song “Coat of Many Colours,” depicting faith, beauty, and resilience.
Surprisingly, both parents do not have the condition. However, the mother has a history of the genetic condition. Her mother explained that her grandfather was a person living with albinism even though she and her mother are not with the condition. She thought it was a form of reincarnation after giving birth to her first son.
With a worried face, she recounts how some people accused her mother of adultery after delivering the first son with the condition. This exposes some societal misconceptions of the condition and the psychological impact on families.
Misconceptions on Albinism
Persons with albinism face various forms of discrimination. This is evident in the offensive local names they are called such as ‘Yey vo’ [Ewe] Ofri [Twi] and Gersoshi, [Hausa].
It is common to hear that persons with albinism do not excrete on Fridays or they possess spiritual powers which are good for money rituals. Some have even said persons living albinism are signs of bad omen. And that sexual intercourse with them will cure AIDs. There are even people who think persons living with albinism do not even die.
The Project Officer of the Ghana Association of Persons Living with Albinism [GAPA], Kwame Daklo, has labelled these comments as offensive and derogatory.
According to him, they create insecurity and subtly influence people to discriminate against them.
Under The Same Sun (UTSS), a civil society organization which is committed to ending discrimination against people with albinism, in a report, confirmed the existence of some myths, such as the one suggesting that the body parts of persons with albinism are a source of fortune and good health. There’s even the belief that the corpse of a person with albinism, can be worth up to US$75,000 on the black market in some African countries.
There have been several instances of public humiliation, discrimination and violence against such people simply because they look different owing to the absence of a pigment in their skin. The UTSS has been vocal in condemning same and has provided some episodes of this ill-treatment. Few of these instances are as follows;
On February 17, 2015, the body of one Kofi Yeboah, 35, a person with albinism, was found in Amanase-Boketey near Suhum in the Eastern Region. A local pastor is suspected. Local police have tended not to respond to such crimes. After public and media pressure, the homicide unit at police headquarters in Accra took over the investigation.
In June 2015, Yussif Fatau, a seventeen-year-old student with albinism managed to gain admission to Atebubu Senior High School. However, he was denied residency at the boarding house. Leaders from the Traditional Authority told the landlord that Fatau should be evicted. The landlord complied. Ghanaians with albinism are also often barred from assuming chieftainships or leadership positions.
In 2014, Nana Agyare Osei Tutu III, Chief of Bukruwa, warned that people with albinism in his region were at risk of being killed for ritual purposes. He said he could not guarantee their safety and recommended they leave the area. The chief said that taboos against people with albinism were pernicious and he didn’t know how to stop them.
In 2009, a two-year-old boy with albinism was kidnapped. After a week, a lady, Akua Linda was spotted with the boy and apprehended at the Kejetia Bus Terminal in Kumasi. She confessed that she and an accomplice had conspired to sell his body parts.
In 2010, Newton Kwamlia Katsekua, Executive Director of the Ghana Association of Persons with Albinism was attending a funeral in Akwamufie, eastern Ghana. During the funeral ceremonies, four different parties warned him that local tradition does not tolerate people with albinism. They told him to hide or leave. He hid in a car for the next nine hours. Later, he reported the incident to several authorities but has never received a reply.
East African countries such as Tanzania and Malawi, record some of the worse cases of violence against persons living with albinism due to these misconceptions.
According to the 2019 report by the Independent Expert on the Enjoyment of Human Rights by Persons Living with Albinism, some countries in North Africa such as Morocco, Tunisia and Algeria, were also noted for discrimination, stigmatization and public humiliation of persons living with albinism.
Although in Ghana such violence isn’t perpetrated against persons living with albinism, the existing misconceptions about them linger in the minds of many Ghanaians, and this makes them feel unsafe.
Majority of people living with albinism are very sensitive to light, and eyeglasses can partially correct this problem.
The Ghana Association of Persons Living with Albinism (GAPA), is an organization under the Ghana Federation of Disability Organizations. It engages the government on issues of persons living with albinism. Governmental services are yet to catch up with them, due to the complexity of whether or not their condition can be tagged as a disability. As such, many people who have the condition do not receive the resources they need, including educational support in school, periodic skin screenings and medical supplies such as sunscreen.
In Ghana, the local Shea butter which is in abundance is used to produce sunscreen.
A report of the Independent Expert on the enjoyment of human rights on persons living with albinism indicated that although there are legislative protections in place, persons with albinism sometimes lack information and understanding on processes within the justice system as well as information on the remedy for human right violations.
Normalized marginalization, as well as stigma, discrimination and negative attitudes on the part of others, maybe disempowering, and prevent them from pursuing complaints or initiating cases when their rights are violated.
To create awareness, the celebration of the International Albinism Awareness Day marked annually on June 13, was adopted by the General Assembly in 2014 and has facilitated public education on albinism.
This calls for action by government, civil society groups and citizens to support persons with albinism, which is an irreversible genetic condition.
In a society where everyone is crying to the government for one need or the other, the issue faced by persons with albinism must be looked at more holistically than is being done now. It is a social, political and human right issue.
Institutions of state must take up the task and invest heavily in educating the public and working with traditional authorities to abandon backward and inhuman cultural practices that debase other human beings. This education must be done pointing out to the public what sanctions exist for those who abuse such persons.
If this view about persons with albinism is corrected, it will translate to other critical areas such as their employment and employability and how the public perceives them generally; this will improve their self-esteem and help build a good society.
The media must also help to discourage stereotyping persons with albinism. The other agents of socialization must be at the forefront of this campaign.
The writer, Daniel Abugre Anyorigya, is a journalist with Citi FM/Citi TV and citinewsroom.com