Turks with albinism describe daily problems on UN day
International Albinism Awareness Day aims to improve understanding of albinism
Stares from strangers in the street and cruel jibes from children are just some of the everyday slights faced by people with albinism around the world.
In Turkey, as in many other countries, people with albinism often have to deal with a degree of social marginalization that makes it difficult to find work. They also have to cope with extra financial costs associated with their condition.
Burcu Cakir, the founder of Turkey’s Albinism Association, is using International Albinism Awareness Day on Monday to call on the government to raise awareness of the problems faced by Turkey’s estimated 4,000 people with albinism.
Cakir, who has a six-year-old son with albinism, told Anadolu Agency: “We expect support for youngsters and adults living with albinism in working life.”
Albinism affects around one in 17,000 people in Europe. The condition is a result of genetic mutations that affect melanin-producing cells, causing very pale hair, skin and eyes.
People with albinism also usually suffer poor eyesight as well as conditions such as nystagmus, or involuntary eye movements, and sensitivity to light.
“Melanin pigment has many functions in both the skin and the eye,” Rana Anadolu, an Ankara-based dermatologist, said. “These functions are not just related to appearance… melanin is tasked to protect the skin [and] eyes from the impact of light and ultraviolet.”
Skin cancer is a major risk for people with albinism.
“Public service announcements should be prepared and broadcast on television channels to raise awareness,” Cakir said, noting that previous attempts to raise awareness had failed. She also called for the government to help with the cost of spectacles and sun protection.
Elif Ekinci, 32, from Istanbul, said she typically paid out around 700 Turkish liras ($240) every six months on eyewear - a significant sum in Turkey where the average monthly household disposable income is the equivalent of around $1,120 according to the Organisation for Economic Cooperation and Development.
Approximately one in 17,000 people in the world suffer from some form of albinism and an estimated 4,000 live across Turkey.
Although the treatment of people with albinism in Turkey is far from that received by those with the condition in some other parts of the world such as east Africa, Mustafa Turkmen says he and others are treated differently.
“It is both different and difficult but the best thing is everyone remembers you even after many years,” he said. “Also you do not have the luxury of being lost in the crowd.”
Turkmen, 23, from Turkey’s southern province of Adana, said people make several assumptions about him. “At airports, some people presume we are foreigners and try to speak other languages such as English, German or Russian,” he said.
Mecnur Duman, 23, of Istanbul, also has the condition. “I am treated as if I am a tourist, which is enjoyable,” he told Anadolu Agency. “I establish close relationships with foreign tourists because they assume I’m their countryman.”
However, he remembers his childhood as a more difficult time.
“You become the subject of jokes... In addition, I had a difficult time in school due to the insensitivity of teachers.”
Poor vision meant sitting at the front of class, where Duman even some teachers mocked his condition.
According to Cakir, children with albinism receive little support from the state in dealing with their condition, which can have a psychological impact and make it difficult to forge friendships.
“It is the teacher who must ensure a rapport between the child and his or her friends but unfortunately few act with this awareness,” she said.
“Children can sometimes be cruel among themselves. Challenges occur in games. Naturally, hide-and-seek game is not a favorite [for children with albinism] as they cannot clearly see.
“Besides vision problems, skin reaction to sunlight and psychological problems, people living with albinism face unkind, mocking and dismissive reaction from society.”
Cakir founded the Albinism Association in 2013 and has worked with the media and through holding conferences for associated professionals to raise awareness. The group’s first event, a conference in Ankara in 2014, saw ophthalmologists, opticians and dermatologists attend.
Elif Oguz said her family used to refer to her as being disabled and told her she would have little chance of finding a husband. Recently engaged, the 26-year-old from Istanbul says she is annoyed by people asking questions about her appearance.
“I am not getting married to prove myself to other people,” she said. “I am aware of what is going on around me. I am getting married because my fiance values me.”
Oguz said that after she initially explained her condition to her fiance there was nothing to keep them apart. “He said ‘I love you, it is not important.’ I clearly told him everything. I said I cannot recognize you among a crowd but he was positive and said there was no problem. He understands I think.”
Monday will see albinism groups mark International Albinism Awareness Day through the #IlookoutforAlbinism slogan on social media.
In a statement on the UN website, Secretary-General Ban Ki-Moon said: “I call on all countries and stakeholders to recognize that human rights apply to all people everywhere, including people with albinism.
“I urge them to make special efforts to end the discrimination that threatens the wellbeing, health and even the lives of people with albinism and to target them with programs that will enable them to play a full part in society.”