Persons With Albinism in the MENA Region Fight for Their Rights

On International Albinism Awareness Day, activists struggle for recognition

June 13 is International Albinism Awareness Day, concerning a genetic condition that is poorly understood in the Middle East and North Africa. Activists hope bringing greater attention to the disorder will result in improved tracking, support and treatment.

Albinism comes in several forms, most often appearing in the skin, face and eyes, where the body is not able to manufacture enough melanin, a pigment that makes color and provides protection from the sun’s rays.

Ikponwosa Ero, the United Nations independent expert on the enjoyment of human rights by persons with albinism, comments in a 2019 report on the dearth of information regarding the congenital disorder in the region.

“The independent expert noted a significant lack of data on persons with albinism in the Middle East and North Africa region. Only two stakeholders provided inputs, 107 namely, the Islamic Republic of Iran and Jordan,” she writes.

Still, neither country keeps official statistics on the number of people with the condition.

Ero notes prejudice that those with the disorder suffer in the MENA region, including “social obstacles to marriage, an institution that facilitates rights and privileges; [lack of] access to employment; and social exclusion associated with the physical appearance of persons with albinism, in particular girls.”

Children are particularly affected in the region, by both bullying and lack of educational opportunities.

“Reasonable accommodation at school … is difficult to obtain largely owing to cost,” she adds.

Ero in her recommendations for the region writes: “In the light of the lack of information available, the Independent Expert emphasizes the need for governments and stakeholders in the region to focus on raising awareness and promoting public knowledge relating to albinism and providing reasonable accommodation to persons with albinism at school and in the workplace.”

Activists in the region are fighting to draw more attention to the plight of people with albinism, as well as create a community to serve as a support group and to ameliorate the absence of data.

Abeer Danish, a Qatar-based mother of a daughter with the condition, is struggling to get her child the accommodations she needs to succeed in school.

“The main issue is pigmentation in her eye; she cannot see like a normal child,” Danish told The Media Line. “It’s very difficult for her to read and write in the correct place. …

“I have searched for help for her, but unfortunately in Qatar the staff at schools are not trained to handle kids with albinism because there are such few cases,” she added. “My priority is to take her to the USA or Canada where they have albinism communities, but my visa applications were rejected.”

For persons with extreme sensitivity to light and at a much higher risk of skin cancer than average, the Middle East climate poses particular difficulties.

“The weather here is a problem. It’s too hot right now at 40 degrees Celsius [104 degrees Fahrenheit], and it is supposed to reach 50 degrees Celsius [122 Fahrenheit] next week,” Danish said. “She cannot go out because of her skin issue.”

In Israel, Zohar Sade, 25, also says the weather is problematic for people with albinism.

“There will always be a risk when you go out, so you wear long pants with sleeves,” she told The Media Line. “I like going to the beach, but I can’t. I also cannot go out when the sun is at its peak hours.”

Sade also notes a lack of information about albinism in Israel.

“I don’t think there is a stigma here because there isn’t a lot of awareness,” she said, adding that many people go online to find support.

“We’re kind of a community,” she said. “We have a Facebook group and a lot of parents ask what to do about their child.”

Eliran Golan, CEO and one of the founders of Albi − The Israel Albinism Association, is trying to make things easier.

“I found it hard to find out information about the needs of people with albinism. Parents need to know their rights for a child with albinism,” he told The Media Line. “I saw there was a need for an association, both to collect information and rights in one place and a one-stop place for the community to try.”

Golan and six other parents founded Albi two years ago. Golan, 40, has albinism, as does his 10-month-old daughter, Ariel.

Eliran Golan, CEO and one of the founders of Albi, Israel’s first albinism association, with his 10-month-old daughter, Ariel. (Courtesy)

The Albi Association wants to change the law to get the condition recognized by the National Insurance Institute, Israel’s social security agency, for disability benefits. Only sufferers with poor vision are currently eligible for financial assistance.

“People with albinism have more difficulty than just with their vision. They have fewer job prospects because they can’t go outside,” Golan said.

Albi also is trying to change how Israel tests for photophobia (discomfort or pain to the eyes due to light exposure, or by the presence of actual physical sensitivity of the eyes), which can start as early as age 3, when children can speak about what they see. Currently, testing is held in a dark room, but Albi wants it performed under more normal, everyday conditions.

Golan said he did not realize he was different from other people until he was 6 or 7 and started school. Children used to call him names like “Casper,” “ghost” and “milky.”

“Children can be mean about it. My nature is that of a fighter but after a couple of years of being harassed and physically fighting people who said mean things to you, I realized I couldn’t change people with violence so I decided to change my ways and ignore people who make jokes,” he said.

“I think after ignoring it for a while … I realized that for other people to accept me, I needed to accept myself. To change other people’s perception, I had to change how I see things,” Golan said.

Sometimes, often out of ignorance, people would come up to him and think he was the famous Israeli singer Eli Luzon, who is albino, or his relative.

“Some people even ask me to sing his songs. It was offensive at first,” Golan said. “But after I changed how I saw things, it became funny for me, I even sang his song. Humor became a way of coping with how people reacted.”

Knowing what it is like to grow up with albinism, Golan has concerns about his daughter socially but also has hope that her experience will be easier than his was.

“I hope that my daughter will be okay, that she’ll have a lot of friends and she won’t get picked on at school too much,” he said.

“I think it’s a lot easier socially now,” he continued. “I’m thankful to the person who invented Elsa [from the Disney movie Frozen], who has very white, blonde hair. Thanks to her, people want to have hair like her, like my daughter.”

Health-wise, Golan has fears that his daughter will have worse vision than his. While he is legally blind, he says he has approximately 10% vision.

“It is not a lot of sight but you can manage,” he said. “I can use public transportation, I use a bike sometimes. … I can do almost anything except drive.”

While albinism comes with its challenges, Golan also considers it a blessing.

“A lot of people want to be special; they dye their hair or get tattoos to distinguish themselves,” he said. “But we don’t need to do anything. We were born special.

“It’s a process you need to go through. Then you realize it’s a gift to be angel-like,” Golan said.

In Israel, there will be a conference on July 7 to officially inaugurate the first “one-stop shop” medical facility in the country for people with albinism.

The program actually kicked off in January at Tel Aviv Sourasky Medical Center. While there are still separate clinics for different conditions, such as dermatology and ophthalmology, the offices will work together for people with albinism. The facility will also collect data about people with albinism.