Albinos Rise With One Voice

Doctor Rebecca Optometrist

By Lucy Oladipo, a PWA/Dares Salaam

They arrived country by country. Some, as a group, others individually. The large number of   Persons with Albinism (PWA) arriving Julius Nyerere International Airport, Dar es Salaam, Tanzania was a clear indication that something was taking place in the country. These were PWA attending the first Pan African Albinism Conference, at Julius Nyerere International Convention Centre (JNICC) in Dar. In attendance with the PWA were members of Non-Governmental Organisations (NGOs), experts and friends from Italy, Japan, Norway, United Kingdom, Neitherlands, United States of America, Turkey, Spain, Belgium, France and German PWA coming from 29 African countries was quite amazing. This was because African countries have high record of attacks including mutilating and killing of PWA. Factors responsible for these attacks include African myths, tradition and capitalism. All the three key factors interact in the context of deeply entrenched witchcraft beliefs. Children made a large proportion of victims due to the belief that their innocence somehow argument their potency.

peter-ash-founder-utss
Peter Ash, founder UTSS.

Lies about Albinism in Africa are many. For instance it is believed that the children’s albinism is always the fault of the mother who had sex with a European ghost or white man, PWA never die, body parts of PWA taken while alive or dead have magical powers capable of making other people rich and powerful, albinism is a curse, contagious and can heal AIDS, among others.
To reach across Africa and the world  in an attempt to stimulate a movement that will not discriminate and plant the seed of empowerment for PWA, Under The Same Sun (UTSS) a non-profit organization organized Pan African Albinism Conference (PAAC) at the end of which, The Pan African Albinism Network (PAAN) was establised.
Driven by the belief that all people have been created in the image of God and thus, have intrinsic value and are accordingly worthy of love and support, UTSS began as a collision of the heart, mind and vision of Peter Ash and Vicky Ntetena. It was registered in 2008 as a Canadian Non-Profit Organisation and later in 2009, it was registered as International NGO in Tanzania. UTSS promotes through advocacy and education, the wellbeing of PWA who in many parts of the world are misunderstood, marginalized, attacked and killed because of their genetic condition.
The purpose of the conference according to Peter Ash, Founder/Chief Executive Officer of UTSS was to get PWA leaders in one place, learn from experts and each other as a training channel to take the next step against attacks and discrimination against PWA. While welcoming government officials of Tanzania and over 200 participants from about 41 Countries at the opening dinner, Ash, a PWA himself, narrated some of his personal experiences of stigma as a young boy when   growing up in Canada. He urged PWA to believe in themselves and work hard saying ‘you have challenges. .it not easy but you have hope. Today, it’s our time, its our day”. Ash added, “you must believe yourself as having albinisms. Then people will accept you as a human being”.
With the Theme – ‘Our goal is to make attack, stigma and discrimination a faint memory’, the four day conference featured presentation of papers, free eye and skin screening, beach tours among others. Training sessions covered topics on documenting attacks, engaging your government successfully, Your Human rights and preparing your case for Court, bring the clinic to your country as well as Training teachers and service providers on Albinism. Other topics discussed were What is Albinism? Skin cancer prevention and skin care, Vision-facts and adaptive instruments, Albinism and disability, self-identification and legal frame work and Reporting to the United Nations.

ms-ikponwosa
Ms. Ikponwosa.

Participants learnt about genetics of PWA from renowned world genetics, Dr. Murray Brilliant as well as facts and adaptive vision instrument from a vision optometrist, Dr. Rebecca Kammer who is a specialist on low vision. Aside the training sessions, PWA were all allocated clinic schedule for free skin care and eye test provided by Standing Voice, a charity organization that promotes the social inclusion and wellbeing of marginalized groups. It currently tackles the primary dangers facing Tanzania with albinism. Standing Voice team has over decade experience working with PWA in Africa. While early stages of skin cancer detected were treated using liquid nitrogen applied through Cryo gums, each PWA was given Kilimanjaro sun care cream (Killsun) produced in Tanzania. PWA who have  never treated their eyes did  and were also given free eye glasses. They also learnt about low vision in detail and the need to visit optmologists who specialized on low vision. During one of the sessions, training leaders and service providers on albinism explained that for children living with albinism to excel in school, they must be well positioned using slanted desk to prevent neck and back pain because they have to bend reading. It was taught that they should be given reading devices like telescope to see what the teacher writes on the blackboard and be able to also see the teacher as well as  his/her expression and their colleague.
Still on vision aid for PWA, it was disclosed that special glasses could be obtained for driving and to play hockey. Also, special balls with bells inside and bright hockey sticks could be used to engage in the sports. Furthermore, PWA were urged to demand from teachers or Education Ministry of their countries to get exercise books with wide line, test books with bigger fonts and extra time to write during  examinations because it takes children with albinism more time to read due to low vision.
The need to ask teachers to speak as they write on the blackboard was emphasized because it is easier for children living with albinism to quickly understand since their sense of hearing is stronger than seeing.
On Human Rights violation, ways of collecting information in detail and sending it to the United Nations, Home Government and Court were discussed. Also, how to lobby Government to take possible measures to protect the life and health of PWA, how to demand from Government, Health and Educational services, free medical care especially when it comes to skin cancer and  legislative laws that will protect  PWA.
The most touching point of the conference was the session where victims of attacks were brought in to speak about their scary and painful experiences. Participants wept as the victims spoke one after the other. After, the 29 African countries came up with five resolutions each which were presented as “Our action plans”. These would be put together To form five resolution for the whole of Africa. At the conference, it was agreed to set up an online Pan African Albinism Network, where PWA will share data, experiences, expertise and information about attacks.
Commenting on the conference, UN Independent expert on enjoyment of Human rights by persons with albinism MsIkponwosaEro, a Nigerian PWA, described it as an executive event with unique opportunity that has never happened before. She said “we shared our problems and hopes. For me, it was real privilege to witness the unfolding of an historical event to try and end the attacks and respond to situations of emergency for help”. Vicky Ntetere, Executive Director of UTSS added, “I felt strong unity, saw people working together. There was co-operation to be of one strong voice to the world. Together we stand, divided we fall. One of the participants, Faith Bwanika from Africa Albino Foundation, Uganda who described the conference as a promising one for Africa, opined that “more emphasis should be put on how to end the attack killings and sacrifices against PWA in Africa”.
As for Ash, his dream is that one day, Persons With Albinism will take their rightful place throughout every level of society, and that the day of discrimination against PWA will be a faint memory.

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