The word Albino means a white person. It is derived from the Latin word “albus” meaning “white”. Since the 17th century the word Albino has been used to describe living creatures with Albinism, having little or no color in the skin, eyes and hair. For humans the term people living with Albinism is preferred by some because it emphasizes that these are people like anybody else who live with a special condition:”Albinism”. Most people use both terms interchangeably. Language can shape ideas and create reality. Therefore, we should avoid using words like “orisha” meaning a small god. Using this word is very impolite and singles out Albinos in a negative and an unjustified manner.
Simply put, albinism is a decrease in or absence of melanin, the protein necessary for pigmentation. This typically affects the skin, hair and eyes.
Melanin is a natural substance that gives color to hair, skin and iris of the eye.
There are a number of issues and challenges that hinder and affect the total well-being of an Albino. These include: Vision, Skin Problems, Lack of Self-esteem, Myths about Albinism, Stigmatization, Stereotype and their effects on Learning.
No, it is a myth.
No, their vision may vary from 20/40 to 20/400. Persons with Albinism may be “legally blind” which is defined as vision that is not correctable to better than 20/200. However, this is quite different from total blindness.
Yes, but with minor modifications and minimal assistance, students can be successful. The social side of education can potentially be the most difficult however, due to name calling, bullying, etc
They wobble because of a condition called Nystagmus. Why some people with Albinism have rapidly moving eyes do not focus together. This is called nystagmus. The eye movement is not under the control of the person. If one eye focuses, the other might move. This makes it difficult to see properly.
Not necessarily. There are different types of albinism that affect several different genes. If two people with the same type of albinism reproduce, all of their children will have albinism. If two people with two different types of albinism have children, NONE of their children will have albinism. The genetics are complicated, but that’s how it works.
Absolutely, with proper protection from hats, glasses, sunscreen and sunglasses, PWAs can go anywhere.
No, not all Albinos look alike. PWAs differ according to whether they have complete absence of melanin pigment or an insufficient level of melanin pigment. Scientists have identified different types of Albinism. According to the different types some people living with Albinism have a light brown skin and reddish hair, others have a white skin and blonde nearly white hair, some have many black moles on white skin, others have few.
Although their intelligence is not impaired, children with albinism often do poorly in school and might be treated as stupid because they cannot read the blackboard. School age children with Albinism often find themselves left out of extracurricular activities and social events in school. Teachers should know about Albino children and make a special effort to allow them to follow the lessons. Families and schools must make an effort not to exclude children with Albinism from group activities. Contact with other PWAs or with people who have Albinism in their families is most helpful. Children with Albinism may learn to compensate for their lack of self-esteem by striving harder in school and other activities. They tend to exceed at whatever they try. Many black people with Albinism have succeeded as technicians, legal assistants, entrepreneurs, computer programmers, college professors, etc.
The lack of protecting pigment in the skin disposes PWAs – in the same way as white people - to the risk of acquiring skin cancers. Therefore, every PWA is strongly advised to protect his/her skin from the sun’s rays by using sunscreens, wearing long sleeved garments, caps or hats and if possible sun glasses.
Mouth/ Body odor and personal hygiene is unique to everyone. PWAs should please note that appearance is everything. In order to be well accepted PWAs should make a special effort to dress well, look presentable and maintain good personal hygiene.
The skin of people living with Albinism has almost no way to protect itself against the rays of the sun. It burns badly after long exposure to the sun and the skin itches and hurts. The skin of an Albino tries its best to protect the body from the rays but as it has only small quantities of pigments it can only create some dark spots (moles). Therefore, the dark spots are a sign that the skin is not well enough protected from the sun. If a person living with Albinism is able to completely avoid the sun’s ray, the skin will have few moles or none at all.
Many people treat PWAs differently from other people. They avoid contact, they may even cross to the other side of the road or change seats, or avoid sitting next to a PWA. Many believe the myths and rumors which are spread. Society isolates PWAs in some events and thus reinforces the existing misconceptions about Albinism. This leads to stigma and discrimination, putting PWAs on the margins of society. Worse is that this discrimination contributes to lowering the self-esteem of young PWAs. With low self-esteem it is difficult to be accepted or to get a job. Therefore, discrimination creates a vicious circle for Albinos. A very basic human need is to be loved and accepted and cared for. Albinism often appears in a family unexpectedly. It can be a catalyst for acceptance and love involving siblings, grandparents and the parents. Fighting stigma and discrimination and fighting for equal rights for Albinos is a big challenge in the society.
he community doesn’t hate PWAs. Some people might have a negative bias but others show love and care for PWAs, example parents, siblings and friends. Human beings often fear those who are different. In a white society many people fear blacks and run away if they see them. In a black society some people are scared of PWAs as they do not understand the truth behind albinism .They automatically fear PWAs because they look different. The fear might be reinforced by rumors they have heard, e.g. that if you touch an Albino, you will be white as well, if you are pregnant and you meet an Albino your baby might be white. The truth is that these rumors are false. Albinism is a hereditary condition and not contagious. There is no reason to fear a person with albinism. The negative attitude of the community changes when people know more and if they know a person living with Albinism personally and have experienced that they are friendly and kind. PWAs themselves can play a role to improve understanding if they address people frankly and in a friendly manner.
People who need special attention can be seen as a burden as they might request help or special support which others do not need. Parents and other family members may need to face some unpleasant comments and have to cope with teasing and name calling. Siblings need to understand why their brother or sister looks different and why he/she needs special attention. The family is the key to help an Albino child understand and accept himself or herself. A family able to accept and love their Albino child creates a special bond in a family – it gives the family the feeling of being strong and united.
Many people do not have sufficient knowledge of the condition as it affects the skin and eyes. Some have a conviction that they are protecting PWAs from being exposed to further ill effects. They might even seek to protect PWAs from tasks that PWAs are capable of performing without seeking their opinions. People ought to understand the handicaps that people living with Albinism might have and give them tasks which suit their abilities. For example working in the sun for a long time is not appropriate. It is important for a person with albinism to realize their limitations and accept their abilities and to be willing to choose and perform tasks that are appropriate.
The belief that Albinos are less capable is not valid at all. There are impressive examples of PWAs who have shown their ability and efficiency in various professions as teachers, scientists, lawyers and some participate actively in political leadership. People like Ikponwosa Ero Ikponwosa, the United Nation’s first Independent Expert on the enjoyment of human rights by persons with albinism, Hon. Al-Shymaa Kway-Geer (MP), the Bongo Flava female singer Keisha, the lawyer Abdallah Possi and Sizya Migila a Human Resource officer at Tanzania National Audit Office are examples of impressive careers of Albinos in Tanzania. The musical star Salif Keita is an i n t e r n a t i o n a l l y recognized afro-pop- singer-songwriter from Mali. He is highly appreciated in Africa and Europe as the “Golden Voice of Africa”. We also have super models Diandra Forrest, Shaun Ross, Thando Hopa breaking barriers and paving the way.
People have a tendency to fear or avoid things they perceive as different. People are also afraid of the attention that comes with being with a PWA. There are also many examples of people who are in a romantic relationships with PWAs and there are many PWAs across the globe who are married. Each such example in the community helps to demystify the existing myths.
Albinism is a hereditary condition which means you get it from your parents. Two black people can give birth to an Albino child, if they are both carriers of the albinism gene. Most people are unaware that they are carriers and find out when a child with albinism is born. About 1 in 70 people carry the albinism gene. Presently it is not possible to know who carries the gene. If a PWA marries a black person the chance of giving birth to a child with albinism is low. Most PWAs who are married to a pigmented partner have pigmented children. On the other hand a couple who have already given birth to one Albino child has a high chance of having a second child with Albinism. For a child to be born with Albinism, both parents must be carriers of the gene.
In some cases, after having seen that the baby has a light skin the father rejects the child blaming the mother for having an affair with a white man. This is a misconception based on ignorance and mistrust. The more people know and learn about Albinism the less they will react like those fathers in future.
People who are perceived by others or themselves as being different (this may be due to race, religion, height and even Albinism) have difficulties in being fully integrated into society which makes it much harder for them to form relationships. So it is not correct to relate this experience only as relating to people living with Albinism. PWAs may not have the confidence to form romantic relationships based on the experience of stigma and discrimination. They are often more worried than others of being refused by prospective love partners. Being loved first of all means being self-confident and loving yourself. It is a challenge to families with PWA children to help build self-confidence and to encourage their kids to believe that their difference is only on the outside (skin and eyes), and they have other abilities like pigmented people. As it is for all other people the more you develop yourself through education and training the easier it is to independently manage your life and to find a partner to live with.
There is no simple test available to determine whether a person carries a gene for Albinism. If parents have had a child with Albinism previously, there is a way to test in subsequent pregnancies to see if the fetus has Albinism. The test uses amniocentesis (placing a needle into the uterus to draw off fluid) cells in the fluid are examined to see if they have an Albinism gene from each parent. However this test is costly and only available in industrialized countries or specialized expensive hospitals.
Normally two Albinos will get a child that also has Albinism. Therefore, an Albino couple should carefully consider, if they would like to have a child together – having experienced themselves the problems of living with Albinism in a black society. Albinism is a genetic condition and it requires the baby to carry Albino genes from both parents to demonstrate Albinism. However, there is not only one type of Albinism and not only one Albino gene. If parents of different types of Albinism and with different defects in their genes have a child, this child could be without Albinism. However, this is extremely rare. Only a few cases have been reported worldwide.
The disability of people living with Albinisms does not interfere with the ability to have children. The disability is on the skin and not in the reproductive system, so PWAs can have healthy children. They may have pigmented children, if the other parent does not carry the Albino gene.