This year 2014 and this time we are in the magnificent newspapers. We are guests of the Sunday supplement of the evening, Ben, Gizem Dönmezer and Moti Romi. Another information about Albinism with a newspaper interview adorned with fun poses in Levent Çarşı in Istanbul. Prior to this news, Albinism was once again the subject of the news with the news published in Bianet in August, while the busefer was told different views of Albism with 3 young Albinism people.
Log:
Date: 26.09.2014
Media: Akşam Gazetesi
Author: Sibel Ateş Yengin
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“Sadece bizim rengimiz farklı”
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His hair is white and his eyes are transparent. In fact, we have no difference other than his colors. They’re just Albuminism. While some people are exposed to negative behaviors in social life, some Hollywood movies also feature them as bad characters in their stories. “We are one of you, we have no difference. We just came together with the President of Albinism Association Burcu Çakır Keskin and members of the association with albinism, and they talked about albinism and being an individual with albinism.
ALBINISM FRIENDS
Our association was established in 2013 for individuals with albinism and families with children with albinism. We also have a facebook group called ‘friends of albinism’. The family with a child with albinism finds us and asks what to do. We connect, we organize meetings. We came together in Istanbul and Isparta. We started to provide regional representations to volunteers and people associated with albinism. We have representatives in Adana and Isparta. We held a conference in Ankara. Experts of the subject told about albinism. A friend of METU graduate has organized the METU Alumni Association. “How did you do it for free? I guess you are a very rich association. ” However, we do not have much income. Created by volunteers. We believed and somehow it happened. We were also invited to the European Albinist Days as an association. We went with our own means. We were very pleased because associations and scientists from many different countries of Europe participated. Experts gave information about the skin, eyes and social problems of individuals with albinism. We talked about what kind of benefits we can bring each other. In one session, young people with albinism spoke about their problems.
I HAVE BEMBEYAZ KIDS
As soon as my son was born, I took it on my lap. I was facing a white boy. We looked at each other with my wife and ‘Could it be albinism?’ we thought. My wife had friends with albinism at university, but I had never met. I had no knowledge of this subject before. For me, they were blond people. We started to be informed with my son. Our research is still ongoing. Because the information provided by the doctors is very insufficient. “What will I do, how will I look, what might he need?” you say, but nobody even guides you properly. We learned that our child had albinism as a result of a pediatric ophthalmological examination. “Your child has albinism. You will protect it from the sun, bring it to an examination every six months ”. Since albinism carries the same gene, it is more common in consanguineous marriages. We are not related to my wife. “Your chances of having this child are lower than your chances of winning the national lottery,” said our doctor. Because we found each other as two people carrying the same gene in the city of 17 million.
EYES SENSITIVE
The main criterion in albinism is that there is no color in the eye. Your eyes are brown because you have a color pigment in your eyes and your hair is the same. For example, Mehmet’s eyes are transparent, it seems as if it is blue gray, this is due to light reflection. When the light comes from a different angle, the eyes appear red, but this is because the eye is transparent because the blood vessels behind the eye are visible. There are different types of albinism. Some have color in eyes, some have color in both eyes and skin, and some have no color. This situation creates a visual impairment. But this is not like myopia, hyperopia, astigmatism, which we call eye defects. Light-related problems occur in eye discomfort in albinism. Since there is no color, the light penetrates directly behind the eye. Thus, the eye cannot fully complete its development and transfer the signals it receives to the brain. His eyes are very sensitive to light. When you go out into the light of a dark movie theater, your eyes are always experiencing laundry or albinism. Mobility in the eyes is due to the perception of light coming from outside as a danger. The eye muscles are deformed. If you have noticed, someone with albinism will look down. So they have to use sunscreen and goggles to protect them from ultraviolet rays. We can supply some products at a very affordable price through our association. If you have noticed, someone with albinism will look down. So they have to use sunscreen and goggles to protect them from ultraviolet rays. We can supply some products at a very affordable price through our association. If you have noticed, someone with albinism will look down. So they have to use sunscreen and goggles to protect them from ultraviolet rays. We can supply some products at a very affordable price through our association.
THE FILM MAN’S ALBINIZED
There are teachers, civil engineers, computer experts in us. If they manage to overcome their obstacles due to their differences and support their families, they do not have a problem finding a job or social life. There are so many superstitions about albinism.
In Hollywood movies, individuals with albinism are portrayed as evil characters. For example, in the movie ‘Matrix’ there was a bad character with twin albinism. So changing this perception and saying, “We are one of you, we have no difference. We are just telling the idea that “the color of our hair and eyes is different.” They have social and physical problems especially in school period. Because they see less, they can often become a mainstreaming student. Because if the disability report is received, the school offers exam paper with large print. The university exam has the advantage of taking the exam in a separate class. If she takes the exam normally, she may not be able to use the time properly because she cannot read the questions easily.
Ali Şengöz:
Whether or not ALBINISM IS LIFE BEAUTIFUL
It’s hard to tell my feelings about albinism, actually, it’s like telling your whole life. Some puts it in the center of their lives, thinks as if it’s the cause of everything, and some sees it as a part of life. I chose the latter. If I am in the middle of the sea and the sea is very wavy, I think about what I can do to navigate between the waves and try to spend my time in the most pleasant way, instead of spending my time asking why I wish it wasn’t. I do not emphasize those around me as “I am albino”. Therefore, none of my friends will see me differently, and neither will my friends see them differently. Of course, the biggest factor in this is the support I received from my family. So far, they have not told me “You can’t do it” for nothing, and if I can’t, I discovered it myself, I gave up myself. Feeling the love of your family is very important in life, so I owe them a lot. Do not think that I talked so easily and my life was very comfortable, I had a hard time as a child. I was subjected to brutal kidding of children, and I remember my sadness when I could not take an exam that I could do very easily, as the writing seemed faint at school. Of course there are also fun stories. Like tricking the beach shopkeepers who do not believe that I am a Turkish by making a tourist number. I discovered the telescopic glasses just before the university exam. It took time to get used to those glasses, my eyes tried to ache, pain, but look at the exam now, I am still 33 years old (I am still reading) (laughs). I translated the Albinism information on the website of the American NOAH association into Turkish, set up a website and published these translations there. Back then, 1999, my website was the only Turkish resource about Albinism, 15 years ago, my only source is unfortunately. I met hundreds of people through this site. I met mothers, fathers, children, I just convey what I see, what I know, but even that was enough. Because all they needed was sincere and real knowledge. If you have loving people in your life, life is good regardless of whether it is albinism or not … I met children, I just conveyed what I saw, what I knew, but even that was enough. Because all they needed was sincere and real knowledge. If you have loving people in your life, life is good regardless of whether it is albinism or not … I met children, I just conveyed what I saw, what I knew, but even that was enough. Because all they needed was sincere and real knowledge. If you have loving people in your life, life is good regardless of whether it is albinism or not …
Gizem Dönmezer:
I DON’T PAINT MY HAIR
The sentence I remember most clearly about my childhood is “Our daughter albino so her hair and eyes are like that”. My family, who was always supportive and never felt uncomfortable because I was an albino, would explain people patiently at that time. Although the brutal criticism from my friends during my primary school years made me very sad, my parents were saddened by their persuasive speeches and told me to tell my peers about my situation. I would try to explain that my discomfort was not contagious and that I saw less than them. I started to express myself more comfortably in secondary school, and now I was less upset about criticism, heartbreaking jokes. Before I started high school, my parents said that I could dye my hair if I wanted to, so I would get less attention, but I thought it wasn’t necessary. I never liked the idea of changing my natural state and getting myself accepted into society. I wanted people to get used to the differences and accept me as an individual with albinism. I showed my friends the telescopic and prismatic glasses that I had to use on the first day of my high school life, which I started with these thoughts, by going to the teacher stand, saying “These are my glasses and I have to use it”. With this move, I prevented the criticism and questions that may come from the first day. Family support is very important in this process. Now, as a university senior student, I’m telling people around me to make albinism conscious, not to impose myself. I showed my friends the telescopic and prismatic glasses that I had to use on the first day of my high school life, which I started with these thoughts, by going to the teacher stand, saying “These are my glasses and I have to use it”. With this move, I prevented the criticism and questions that may come from the first day. Family support is very important in this process. Now, as a university senior student, I’m telling people around me to make albinism conscious, not to impose myself. I showed my friends the telescopic and prismatic glasses that I had to use on the first day of my high school life, which I started with these thoughts, by going to the teacher stand, saying “These are my glasses and I have to use it”. With this move, I prevented the criticism and questions that may come from the first day. Family support is very important in this process. Now, as a university senior student, I’m telling people around me to make albinism conscious, not to impose myself.
Moti Romi:
DOCTORS WRONG! I READ
I have been living with albinism for almost 30 years. I want to be able to share my experiences with albinism with my brothers and their families who are in the same condition as me. Regardless of whether we have albinism, we all live our lives within certain limits. The important thing is not to get tired of trying to adapt to these limits and sometimes to overcome the limits. It was the first time that I exceeded my limits at the age of 15. Fortunately, my hand reached a large binocular used in the hippodromes inside the closet. First, I watched through binoculars from the sixth floor of our house. Then I took the binoculars and went to the living room and started watching television as far as possible. I don’t remember seeing distant objects so clearly until then. My family was puzzled. Although we visited so many doctors, none of them said that binoculars could be the solution. The next day I went to school with my binoculars. I could see what was written on the board quite clearly. The problem was big, but the solution was just as simple. A binocular was enough to extract the potential I had inside. The doctors, who told my family that I could not whisper in my childhood, were not aware of how wrong they were. While telling my story at the graduation ceremony, I remember the day my family’s eyes were filled. The success I achieved was no different from the success achieved by an individual without albinism. The biggest factor in my feeling like this was my social circle’s evaluations as an individual, regardless of whether I was albinised or not. In this sense, I feel lucky. My advice to families of individuals with disabilities due to albinism or for different reasons; is to prepare their children for life as if they had no obstacles. Let the individuals discover their disability themselves and learn to live with them.