Fiifi in a photograph with Kwame Daklo
Albinism is an inherited genetic condition that results in a lack of melanin in the skin, hair, or eyes. Both parents must be carriers of a recessive gene to pass it onto their offspring resulting in slight or no pigmentation in their offspring.
Albinism affects both genders and can be found in all ethnic and racial groups across the globe.
There are two significant albinism types: Oculocutaneous albinism (OCA) and Ocular albinism (OA). OCA is a heterogeneous group of genetic conditions characterised by hypopigmentation of the skin, hair, and eyes resulting from inadequate or no melanin production. It is common among Africans.
OA is caused by a mutation in the X chromosome; since males have only one X chromosome, any alteration causes OA. People with OA suffer from eye conditions such as nystagmus, photophobia, and strabismus due to a lack of melanin in the eyes.
According to the BMC Public Health Research On Albinism in Africa, albinism’s frequency ranges from one in 5,000 to one in 15,000. The prevalence rate can be as high as one in 832 to one in 1,000 people in some selected populations in Southern Africa.
One in 2,652 people live in Tanzania, according to the country’s 2012 national population census. While data is scarce on albinism prevalence in Ghana, it is projected to be one in 1,067 people in the central region.
Over the years, I have encountered many albinism patients. I remember back in Primary School, I had a senior colleague called Philomena living with such a condition. She faced multiple intersecting challenges in accessing quality education, and healthcare due to structural discrimination, marginalization, and stigma from society’s prejudices and stereotypes.
Each time she comes around to hang out with friends who don’t care a hoot about what people say about her, the whole school will be on a standstill. As soon as our paths cross, I either get startled by her presence or distance myself to avoid fear. Philo passes by, and many students, including teachers, go hiding.
Anytime she experiences that, Philomena will hide and cry out without being consoled by her colleagues. No one wanted to associate herself with ‘Phlio Dzato’ as she was called most often.
She was also not assisted with class and home assignments as persons with disabilities suffer from visual impairment, mental disorders, and skin-related challenges a condition they face due to lack of pigmentation. This situation affected her class performance.
At a dual desk, she sat alone and was promoted first. Most teachers were eager to pass her to the next class irrespective of her grade point.
As enshrined in international human rights law, these inhuman practices violate fundamental human rights to life and security.
In any case, we cannot be held accountable for our actions as students. We grew up knowing that albinism is a punishment from God and is very contagious when associated with it.
“Philo Dzato” often struggled to overcome traumatic situations, especially under sunny conditions during our interschool sports. With her hand over her eyebrow attempting to catch a glimpse of the athletic activities taking place on the field, her skin literally burned under the scorching sun.
Ghana is located a few degrees north of the equator, with daily sunshine ranging from six to seven hours. The tropical climate with temperatures ranging from 25 to 35 degrees celsius poses a significant challenge for albinism. The sun’s ultraviolet (UV) radiations have been identified as the main causative factor for skin cancer among albinism patients.
Lack of information on albinism and the need to protect oneself from the sun and lack of access to sunscreen lotions and protective clothing leaves persons with albinism exposed to ultraviolet (UV) radiation, increasing their risks and vulnerability to skin cancer. Studies indicate that skin cancer among albinism patients is 1,000 times greater than in the general population. This is with the head and neck being the most affected areas.
In my quest to separate the facts from the myth surrounding albinism, I met Mr. Andrews Kwame Daklo, an albinism patient and disability rights advocate focused on albinism. He is the current Albinism Program Coordinator at Engage Now Africa and the Communications Officer for the Africa Albinism Network.
Kwame Daklo indicated that in Ghana, albinism patients are subjected to name-calling, ritual banishment from communities, infanticide, and abandonment of children. In addition, ritual attacks, harvesting of body parts, and killings of albinism patients for spiritual purposes.
Myths
“In our part of the world giving birth to a child with albinism is believed to be a curse or a form of punishment from the gods for wrongdoing. This act may lead to the death of a child.
The mother and child face rejection by the husband and his family and, in some cases, banishment from the community. Albinism is believed to be supernatural and therefore does not die but vanishes.
The widespread belief that the condition is contagious leads to people spitting on them upon meeting an albinism patient. This is their attempt to cleanse. Others avoid close contact with those with the condition to prevent contracting it.
It is believed that albinism is the cure for HIV/AIDS and that most women and girls with albinism are raped and later die from the virus,” he said.
Other myths include persons with albinism do not visit the toilet on Fridays, mothers of a child with albinism slept with a white man, a child born with albinism is conceived when a woman has intercourse while menstruating among others.
People also believe albinism patients cannot see during the day. The body parts of persons with albinism make potent charms that can make people wealthy and successful. A myth continues to persist about drinking albinism patient blood conferring extra magical powers.
Kwame Daklo in our conversation stated that over the years, these myths, beliefs, and misconceptions about albinism have created room for serious human rights violations. This has put albinism patients’ lives and security at constant risk.
Growing up in a small town called Tsiyinu in the Volta Region, Kwame Daklo says even though he grew up in a community where persons with albinism were in the midst of things, he was starved of many opportunities in his pursuit to be a better person.
“In my family, we have a number of persons with albinism and there were no restrictions because we were accepted compared to other communities who subject them to torture due to some misconceptions which have no scientific backing
The most challenging era in my life was high school. The stigma and discrimination were too much for me to bear alone. I was the only person with albinism. No family or friends to intercede for me when I am being bullied. And at some point, I thought of suicide because of my conditions at school I was really starving to survive”.
Managing to survive through high school torture Kwame Daklo reveals that the cost of surviving as an albinism patient is unbearable. “The enormous cost of healthcare services contributes significantly to the high mortality rate for albinism patients. The 75ML lotions we apply mostly on our necks to prevent UV radiation as of 2019 cost GH¢150”.
He said members of the albinism community often report that albinism patients who access healthcare are met with unpleasant attitudes from healthcare workers.
This is influenced by the perceptions, prejudices, and myths they are exposed to in their community which discourage further treatment.
Kwame Daklo emphasizes that the right to health is essential for albinism patients, given the health complications associated with the condition.
“The government as a matter of urgency should review and amend the Persons with Disability Act of 2006 in line with the CRPD and the African Disability Rights Protocol. These amendments will help the act adopt a human rights approach to disability and recognise the challenges persons with albinism face”.
International Albinism Awareness Day
International Albinism Awareness Day is observed on June 13 every year. The day is organized by the United Nations (UN) to combat discrimination against albinism patients and to create an aware society.
In Ghana every year, Engage Now Africa embarks on intense innovative public education programmes through traditional media such as radio and television to discuss matters relating to persons with albinism, highlighting that being an albinism patients cannot prevent a person from living their best life, and to encourage others to be accommodating of the needs of those with albinism.
As we mark this year’s day today, we need to reset our minds on how we treat albinism patients. We should eliminate discrimination and harmful cultural practices; albinism is not a crime.
BY Prince Fiifi Yorke