KCBRP KARAGWE.

ALINC

FACTS ABOUT ALBINISM

  • Albinism is a genetic disorder characterized by the complete or partial absence of the pigment melanin in the skin, hair and eyes. While in Europe the rate of people with albinism is approximately 1 in 20,000, in certain parts of Africa the rate may be 1 in 5,000.
  • Many people with albinism suffer from ignorance about their condition, serious discrimination and stigma. In Tanzania people with albinism are being chased and killed, dismembered or otherwise violated. The mistaken belief is that body parts, if used as ingredients in rituals and potions, will bring prosperity to the user!

INCLUSION FOR CHILDREN WITH ALBINISM 

The Liliane Foundation and Human Rights Watch designed a project to protect and improve the lives of children with albinism in Tanzania. This ALbinism INClusion (ALINC) Programme focuses on advocacy and awareness raising. A broad coalition of organizations is involved, including those of people with albinism and local government representatives. The project started mid-2017 and is funded by the Dutch National Postcode Lottery.

ADVOCACY AND AWARENESS RAISING

The number of attacks has decreased considerably recently. Also, teachers in particular are more aware of the effects of albinism than before. However, much remains to be done in terms of safety and awareness raising. The Liliane Foundation and its ALINC partners are undertaking the following activities:

  • Research, to indicate the real number of people with albinism and the magnitude of the problems they may encounter.
  • A baseline survey, to be able to demonstrate that people in general have a less negative perception of people with albinism.
  • Distribution of printed and digital materials to increase awareness and knowledge about the condition.
  • Encounters with local government officials to ensure the inclusion of people with albinism in local social activities such as schooling.
  • Identification, referral and treatment of people with albinism by skin cancer clinics and specialists, and awareness raising of preventive measures.
  • Outreach to parents of children with albinism, teachers and others on how to protect these children against the negative consequences of albinism.
  • Awareness raising among police and other legal people to stop impunity for those that have harassed people with albinism.
  • Events where people with albinism present themselves as persons with the same dreams, rights and ambitions like everybody else.
  • Facilitate re-unification process of Children with Albinism living in Temporary Holding Shelters(THS)

KEY ACHIEVEMENTS - ALINC PROGRAMME

  • The programme has helped spread the knowledge on Albinism and its causes, which has contributed to reduction of stigma, and discrimination against PWAs.

 

  • There is an increased district councils financial support through soft loan to the PWAs, the loans support have facilitated the PWAs group members to engage in a small projects such as breads bakery, soap and batik making, needlework, gardening and poultry keeping e.t.c. These projects have become a stepping stone for their visibility; some of the Tanzania Albinism Society (TAS) branches have started soliciting funds from other donors such as Foundation for civil society-(For example TAS Bukombe)
  • In programme areas the leaders in collaboration with community members have developed and reinforced bi-laws by which protect rights of PWDs/PWAs including discrimination, segregation and harassment such as name-calling against PWA.

 

  • PWAs have started being elected in different positions at district, ward and village levels. PWAs have been appointed to be the members of HIV protection and district development committee for Chama cha Mapinduzi committees (ruling party in Tanzania), National plan of action for ending violence against women and children in Tanzania committee. These initiatives have provided internal capacity strengthening and opportunity for PWAs to learn, and appreciate their conditions of albinism and presenting their challenges in committees for discussions and resolutions.

 

 

  • There is an increased claim on resources by PWA- the access to right information on different services provided by stakeholders, have improved confidence of PWA in claiming some resource and services from the service providers. And this has been responded positively by stakeholders including Government such as transport to facilitate PWA s to attend skin cancer testing clinics, assistive and protective devices and education sponsorship unlike before intervention.

 

  • POs activities in ALINC has helped families of PWAs and community members to accept the children with Albinism and responding to the needs and rights of PWA that has resulted in changing the negative behaviour and practices among parents and families of PWAs. Further more families, government, and community groups are now taking actions in supporting the PWAs with their needs and necessities such as voluntarily visiting and providing the protective and supportive needs to the PWAs/CWAs living in the THS and at community.

 

  • The community members who participated in different sessions on Albinism have understood Albinism concept-causes and conditions and some of them have become ambassadors to their communities while others have become advocates and champions of rights of PWAs in districts and villages.
  • There is an increased and enhanced PWAs’ participation in their development and access to services such health, education and other basic needs. More PWAs have joined different community groups that have increased their inclusion and actualisation.

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