In Uganda, it is estimated that there are over 20,000 persons with albinism (PWA). PWA suffer human rights abuse and discrimination throughout the ages due to myths and misconceptions, because people continue regarding them as social misfits.
The overarching theme of myths and misconceptions associated with albinism is that a child with albinism is a demon.
SCOSP as a model indigenous Non Governmental Organization, is Rescuing, Protecting, Rehabilitating, Educating, and Empowering PWA.
By lacking the skin pigment melanin, PWA have no own sun protection so that they are urgently in need of sun screen and long sleeved clothing. Despite increasing knowledge and awareness of PWA, skin cancer reduces life expectancy of persons with albinism considerably. In fact, 98% of PWA in Tanzania die before the age of 40 from skin cancer, which can be likened to Uganda.
People with albinism have vision problems that are not completely correctable with eyeglasses, resulting in a low vision. It is the abnormal development of the retina and abnormal patterns of nerve connections between the eye and the brain that cause vision problems. Although people with albinism may be considered "legally blind", most learn to use their vision in a variety of ways and are able to perform innumerable activities. Some have even sufficient vision to drive a car.
Concluding, awareness raising and fighting these indefensible lies is a major mission of SCOSP.
Read on for our work
A child attending school will not be successful or even drop out if the living conditions are not favourable. For proper child development, a safe home, healthy food and sometimes medical treatments are necessary. In case these resources are not available, SCOSP supports the families and caregivers with financially or materially. Furthermore, we work with the families and caregivers on strategies for economic stability which might include micro-financing.
PWA face various hardships. In addition to physical problems they are exposed to discrimination and exclusion. In order for a healthy mental and physical development the affected need professionals to talk to about their experiences. We as SCOSP are available for individual counselling which includes coping with mental and physical difficulties. It is vital for the affected to get to know about their physical constitution and how to behave according to it.
Unfortunately, the means of SCOSP for frequent medical check-ups(cancer detecting) are very limited due to lacking finances. Also, provision of prescripted eye glasses is beyond the available budget.
Besides, SCOSP is offering personal guidance and goal-setting for the youth. PWA have the right to decide for themselves and the staff is assisting. In addition, we create platforms where the affected can share their experiences, difficulties and work together.
The current situation shows a great necessity of change in policies and attitudes concerning the disadvantaged. As SCOSP we take the role of an intermediary to advocate and enforce the rights of PWA.
For this issue, we engage leaders at local government level to consider the needs of PWA in the budget and cooperate with international organizations in this field, such as the United Nations. These cooperations contain informing about the current situation, sharing of best-practice models and creation of common strategies. Thus, we try to motivate local PWA to take leadership positions.
Raising awareness is part of advocacy. It spreads information about the current situation of the disadvantaged within decision makers and foremost within society. The aim is to reduce different sorts of discrimination, stigmas and persecution. In order to achieve that we organize outreaches in the communities and create community dialogue sessions. PWA, locals and also decision makers are invited, then informed about albinism and in the end have the possibility to discuss. This involves also the media, which is a powerful instrument to inform the public.