People with albinism are profoundly misunderstood mostly on grounds of color. They face different forms of stigmatization and discrimination based on their age, gender, and place of origin. While some face social exclusion in the community, others are treated unfairly by members of their families. Some are really good in different sports but never get the chance to play because no one would pick them.
However, in recent years, there has been global advocacy against the unjust treatment of persons with albinism (PWA). The international albinism awareness day celebration is one of the ways the world stands with people living with albinism and advocates for their rights. What is the cause of albinism and why are there so many cases of albinism in Africa? Read on to find out.
International Albinism Awareness Day
The international albinism awareness day is an annual celebration on June 13. The first celebration took place on May 4, 2006. This day had been set by the Tanzania Albinism Society (TAS) after increased attacks and killings of persons with albinism in Tanzania. The celebration also followed a campaign for the human rights of PWA that was organized by TAS and several NGOs. Subsequently, it was named National Albinism Day.
On June 26, 2014, the Human Rights Council asked the UN’s General Assembly to proclaim June 13 as the International Albinism Awareness Day. The UN’s General Assembly adopted the proposal in December 2014 with effect from 13th June of the following year. Today, this special day is celebrated across the world to acknowledge the rights of people with albinism. Also, the celebration aims to increase understanding and awareness of the albinism condition.
The Theme for International Albinism Awareness Day 2021
This year’s theme is, “Strength Beyond All Odds.” It was chosen to:
- Show what people with albinism have achieved
- Demonstrate that PWA can defy all odds
- Celebrate people living with albinism that have met and exceeded expectations in different domains
- Encourage everyone to join efforts to overcome the pandemic
The theme for this year’s celebration is particularly important because, in many parts of Africa, people with Albinism often come off as helpless handicaps. However, spotlighting their achievements can help to change this narrative. Also, this can help younger people with albinism to shake off the label on them and strive for greatness.
What is Albinism?
Albinism is the absence of the normal pigment in the skin and hair. People with albinism have pale skin, hair, and eyes. This is because their bodies are unable to make an adequate amount of melanin, which is responsible for giving color to the skin, hair, and eyes. There is no known cure for albinism.
Studies about this condition have shown that it is more prevalent in Africa than in other parts of the world. In the US and Europe, 1 in every 17,000 to 20,000 people have albinism. In Sub-Saharan Africa, it is estimated that 1 in every 1,400 people have this condition. Some populations in Zimbabwe have been reported to have one person with albinism in every 1,000 people.
What Causes Albinism?
Albinism is caused by a defect in one of several genes that produce or distribute melanin. The cells that produce melanin are melanocytes. They are found in the skin, hair, and eyes. When one of the melanin genes is mutated, albinism occurs. That defective gene passes down from both parents to the child. Thus, albinism is genetically inherited and is non-contagious.
Is Albinism Preventable?
It is not possible to prevent albinism mainly because it is genetic or inherited. If your family has a history of albinism, you and your partner can seek genetic counseling. Doing that will help you and your partner figure out whether your children will be at risk of being born with albinism.
Challenges Associated with Albinism
People with albinism face unique challenges that limit their abilities and even threaten their lives. Below are the most common challenges.
1. Vulnerability to skin cancer – In Sub-Saharan Africa, it is estimated that people with albinism die from skin cancer between ages 30 and 40. This however does not have to be the case as skin cancer can easily be prevented by using sunscreen, having regular health checks, and wearing appropriate clothing.
2. Visual impairment – Due to lack of melanin that gives color to the eyes
3. Misconceptions – Some people believe that the bodies of people with albinism bring good luck. As a consequence, they are hunted and killed for rituals.
4. Stigma and discrimination – Due to their pale skin, eyes, and hair.
The international albinism awareness day and other related efforts aim to support people with albinism to overcome some of these challenges.
Discrimination of Persons with Albinism in Sports
Persons with albinism have for long faced discrimination in sports. They are a vulnerable group that experiences intersecting and multiple kinds of unjust treatment in the sporting world because of color. People with albinism are born with talents just like any other person. They can engage in active and full sporting including athletics, soccer, goalball, archery, bowles, and cricket.
But, while ‘normal people’ pursue their talents in sports, almost all people living with albinism do not. Persons living with albinism face various social and physical challenges that limit their participation in sports. Thus, only a few determined individuals attempt sporting. Interestingly, a few persons who have had the chance to feature in sports have done exceptionally well.
Laina Sithole is an example of how people living with albinism can excel in sports. She is an athlete from Zimbabwe. In 2016, she represented her country in the Paralympic Games held in Brazil. A year before that, she also represented Zimbabwe in African Games in Congo.
Sithole’s great performance in the African games enabled her to qualify for Paralympic Games. Previously, she participated in the Region Five Games and won a gold medal. In Kenya, Allan Herbert, founded the Black Albinism Football Club, a soccer team for PWA. According to Herbert, the aim of creating the club was to “help people with the genetic disorder to fight for their space in Kenya.”
Sithole and Herbert are some of the few people with albinism in Africa who have refused to be held back by their condition. Their efforts and performance in sports clearly show that PWA are talented just like any other person.
Why PWA are not Allowed to Play Sports
Several challenges hinder many people with albinism from participating in sport. PWA suffer sunburn when their skin is exposed to sunlight for a long time. If they continue to acquire sub burns, they might develop skin cancer. Sunlight also makes their vision poorer. So, these physical challenges make it hard for them to play sports.
Most major sports in Africa are played outdoor. For example, soccer is mostly played outside in the sun. Even if individuals with albinism are passionate about soccer, they may not participate fully. Many who have a passion for sports forsake it to avoid skin damage. Other than physical challenges, people with albinism fail to engage in sports due to social challenges. According to Zimbabwe’s National Disability Board chairperson, Mercy Maunganidze-Chimanga,
“In certain societies, it is difficult to make friends or even be included in the team because at a young age, children are afraid of the appearance of people with albinism and at older ages, myths and misconceptions kick in.”
In swimming, some swimmers may not get into the same pool of water with an individual with albinism. Consequently, a person living with albinism may think that other people dislike him or her, or they cannot make a good swimmer.
Ways to End Discrimination against Albinism
Countries across the world have made strides in trying to deal with discrimination against people with albinism. This is mostly by enacting laws and ratifying international conventions that seek to accord PWA fair treatment in society. Nonetheless, there are still gaps to be addressed.
Society should become more accommodating when dealing with persons living with albinism. Albinism is not contagious. No one can acquire albinism by swimming together with an individual with albinism. In the sporting world, a lot more needs to be done to accommodate PWA.
For example, some sports can be adapted for indoor play. Also, sports organizers need to train other players on the best ways to relate to people with albinism. Such efforts will go a long way in reducing or even eradicating different forms of challenges encountered by people living with albinism. Also, people with albinism should consider joining human rights support groups. This can help them to cope with any social pressure thy may be facing.
The international albinism awareness day provides an opportunity for the world to show solidarity to people living with albinism. This day provides a platform to address myths and queer beliefs about albinism in Africa. As the world celebrates this year’s international albinism awareness day, governments, societies, and individuals should come together and fight discrimination against people with albinism. Everyone can make a difference. What are you doing to support PWA? Feel free to share with us in the comment box below.