Parker-1/25/10-Positive Exposure
Yesterday Violet, Cheyenne, Ruby and I visited Positive Exposure. We learned a lot of things about albinism and we wrote letters to people. We started to write letters to people who had a big influence, like the governor of New York.
Rick Guidotti runs this organization. Rick Guidotti works with people who have genetic conditions. He works with a lot of people who have albinism.
Albinism comes from the Latin word Albus, “white”. It is a hypopigmentary congenital disorder characterized by the lack of melanin pigment in the eyes, skin and hair. it is an inherited gene defect and not a disease.
People who have it usually have no pigment in them, so they are very pale. Albinism. Their skin lack dark pigment melanin which means they are extremely sensitive to ultraviolet radiation from the sun and they can get sunburnt very easily. Many of them because of their pale eyes can have vision problems. We asked how a person has albinism. Rick said that a child would have albinism if both of their parents have to carry it in their genes. He explained to us that this did not mean that the parents have to have albinism they just have to be a carrier.
People all over the world have this genetic condition. Rick recently took a trip to Tanzania. A country with one of the highest population of people with albinism. We learned that people with albinism are treated like outcasts in Africa. It is also believed that their limbs, in a potion can be used to bring lots of good fortune and wealth. These people go to their homes in the middle of the night and force them not to scream when the cutting of their limbs. Many attacked people have died, many are living with arms and amputated arms or legs and many have lost loved ones. “Since 2007, 53 children and adults with albinism have been slaughtered by people.” Positive Exposure has taken two trips to Tanzania providing the ground community education to stop these killings. Rick Guidotti helps teach people not to kill people with albinism.
“Positive exposure provides new opportunities to see individuals living with genetic difference first and foremost as a human being with their own challenges rather than as a specific diagnosis/disease entity.”
“The men, women and children suffering form genetic diseases live trapped in a particular hell-they face ferocious uncertainty, fear of disability and death, and a segregating difference. Positive exposure not only introduces to the world the stunning beauty of the ‘affected individual’, but also engages the participant in a process that elevates their self-esteem for life.” Sharon Terry MA, CEO and President, Genetic Alliance.
“I did not see my disease in the photos that Rick took of me. I did not see devastation, limitations, or deficiencies. I saw a human being”-Kathryn Arnoldi, Alpha One
People with albinism are often looked down upon or shunned and targeted, so this organization is to help them to believe that they are not ugly, to help them feel beautiful and talented no matter what others say to them.
Here is the Positive Exposure website: http://www.positiveexposure.org/