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What we can do about the impact of stigma on the
lives of people with albinism?
Recommendations
Funded by
FIRAH (International Foundation of Applied Disability Research)
Lead
Coventry University, UK
UK Partners
Advantage Africa (Uganda) and Standing Voice (Tanzania)
Partner in Uganda
Source of the Nile Union of Persons with Albinism (SNUPA)
Partner in Tanzania
New Light Children Center Organization (NELICO)
Recommendations extracted from the research : An investigation into the
impact of stigma on the education and life opportunities available to children
and young people with albinism in Tanzania and Uganda
Project leader (Coventry University)
Dr Patricia Lund
Implementing the Research Recommendations
Research participants were open and generous in sharing their experiences with the SNUPA team and hope that the research will lead to practical and tangible outcomes to improve their lives. The recommendations were launched at the conference ‘We are Human Too!’ on 24th November 2017 at the Africana Hotel, Kampala, during which stakeholders had the opportunity to reflect on their roles in implementing them. The quotes featured in this report are from the research respondents.
Hadiija, grandmother of a young child with albinism told us: I would request to help us implement our views. I request what we have shared be worked on and implemented.
Recommendations 1. Birth & Family Stakeholders including Ministry
of Health to:
1.1 Include albinism in the curriculum for training midwives and other healthcare professionals with responsibility for childbirth and early childhood care.
1.2 Equip traditional birth attendants and village health teams with knowledge about albinism.
1.3 Provide counselling and simple information to families with new-borns with albinism about how to care for their child.
Amina (mother of child with albinism): When I was producing that child, the nurse saw the child coming out and shouted, “What’s this lady producing!” I almost ran off the bed but decided to be strong.
Lydia (mother of child with albinism): …the father of the child has never surfaced ever since I delivered, I look after the child myself.
Sharik (teenage boy with albinism): I faced many challenges since my day one, I am told that when my mother gave birth to me like this, they told my daddy that your wife has produced an albino so he also told the grandfather, he was so annoyed. He called the community members...then said “I have called you here to witness when am sending this son of mine with his curse away from my home,” while referring to me being a curse in a family.
Hasifa (woman with albinism): I started doing some small business to support my children since the husband had abandoned me and had stopped supporting my children. My
Recommendations 2. Education Stakeholders including Ministry of
Education to:
2.1 Train teachers in the educational, health and social needs of children with albinism.
2.2 Include albinism in school science syllabus to help children understand the condition.
2.3 Promote existing booklets and information on albinism to inform and raise awareness of the condition.
2.4 Allow pupils with albinism to wear sun protective clothing including long-sleeved uniform, sunglasses and wide-brimmed hats as part of their national school policy.
2.5 Allow extra time for learners with visual impairment (including children with albinism) to undertake tests and examinations as part of their national school policy.
2.6 Produce educational materials including text books and exam papers in larger print, to benefit pupils with visual impairment.
2.7 Liaise with parents and the entire community to protect the safety of children with albinism walking to school through security measures including ‘walk to school peer groups’.
Paul (man with albinism talking about his experience at school): Then some students were fearing me. They could fear sitting with me on the same seat, sharing things with me but there was one teacher...He could tell them “he is like you regardless of the colour” and he helped me well to study…I still remember that guy though he died. He encouraged me that though you’re different in the colour, we shall be with yo u.
Betty (teenage girl with albinism): Now when I could drink water in a cup my fellow pupils couldn’t use the same cup again, if I eat food they could restrict them from using the same plate.
Sharik (teenager with albinism): The Headmaster strongly told my daddy that they will not allow me in school, rather he should look for albino school or any other schools. My daddy was stranded and one of the teachers felt sorry for us and told the Headmaster “Mr. Headmaster, why don’t you allow this boy to study, he is also a human like us?’’
John (man with albinism) When I was at school, many children used to run away from me and they feared me a lot. They couldn’t eat with me, they could just throw me food or eat and leave for me the remains.
Eunice (woman with albinism): We had a teacher who used to chase me out of class whenever I entered; saying “you’re not supposed to be here”, one day she beat me and chased me out of class.
Fred (Religious leader, without albinism): [People with albinism] face a number of c hallenges, one, most of them are short sighted, so they can’t clearly see on the blackboard. Two, they are discriminated; some children tease them. Some of the children with albinism feel out of place while at school, they lose self-confidence because the ir fellow children don’t involve them in their activities.
Joel (father of two children with albinism): The teacher also called the boy weird names like a ghost.
Paul (teenage boy with albinism): In our communities, most the of schools are primary and th e secondary schools are few…This forced us to look for those schools where they are of long distance from our homes, yet I fear to move alone early in the morning because of much threat attached to albinism condition - and at the end of the day you reach late and you are punished.
Betty (teenage girl with albinism): I am a day scholar, ever since my Daddy lost his job...Long distance from school to home… I was walking one day going to school then I heard a whispering sound saying “She is there, catch her, I will trap her this side”. I started to run away but in the process of running away, I knocked myself and fell down, this was due to short sightedness. With God’s mercy they did not see where I had fallen...I reported to my Dad but he was like “what can w e do now my daughter? There is no way. God must just help us with such situations”.
Sherry (woman without albinism): Their skin is not good when they live under the sunshine. So I learnt that persons with albinism all the time must be under the shade so that their skin is protected well and they must put on long sleeved clothes so that the sun doesn’t heat them hard especially the skins. They must put on wide brimmed h ats such that their skins around the neck, the ears are protected.
Paul (teenage boy with albinism): I had a problem of short sight. … I think short sightedness has caused a lot of deterioration towards my education. Sometimes teachers can draw on a chalk board to show an experiment, but due to short sightedness, this made (me) to perform poorly in such subjects.’
Ngobi Manson(Dermatology officer and medical school lecturer: They [the Medical School] never had that in the syl labus….I gave them some tips on albinism and am spreading it to some other medical students. Otherwise it’s not in their syllabus.
Councillor representing persons with disabilities in local government: In the hospitals, once, the nurse feared to inject one of the boys with albinism. About three nurses kept on asking each other how they would inject the boy. His father called me and told me the whole story. When I reached them I told them that the only difference with the albinos is that their skins are som ewhat hard. But if you’re a real nurse, just go on injecting them.
Recommendations 4. Justice, Security & Public Awareness
Stakeholders including relevant Ugandan Government Ministries to:
4.1 Issue an immediate, high-profile statement expressing determination to ensure that the perpetrators of acts of violence against persons with albinism are brought to justice.
4.2 Review legal and regulatory frameworks to ensure they encompass all aspects of attacks against persons with albinism, including in relation to witchcraft and traditional medicine.
4.3 Enable victims of attack to access justice. This should include educating persons with albinism on their rights, provision of legal aid, educating law enforcement and judicial professionals on albinism and publicising prosecution to deter offenders.
4.4 Work with organisations of persons with albinism to raise awareness of albinism nationwide, through public information and media campaigns.
4.5 Promote rights of people with albinism through existing provision in the UN’s 2013 Resolution on the Rights of Persons with Albinism, the Uganda Constitution, Children’s Act and Local Government Act which calls for ‘affirmative action in favour of marginalized groups’.
Jamal (father of child with albinism): On the side of witchdoctors, they surely hunt these people so we must take serious note on this.
Paul (local councillor): Previously there were accusations that children with albinism are witch hunted, most of the families keep their children with albinism at home. The insecurity around children with albinism is the major problem.
Fred (religious leader): People just suspect and want to use body parts of persons with albinism for traditional practices but…those people are the same as I am.
Julius (Equal Opportunities Commission): We came up with communicational manual which we gave a title, “No magic, no witchcraft, just albinism”… People think that their condition is contagious, others (that it) involves witchcraft…some think that their body portions have magic in them that they can possibly bring more wealth and that is appalling.
Gertrude (journalist): I learnt from a family of five children (with albinism)…that they were having sleepless nights because bad people wanted to steal these children and sacrifice
Sherry (woman without albinism): The difference is the skin, not anything else. They have an upright mind, they have feelings like any other person…Secondly, parents of children with albinism please treat the children the way they are because these children are like any other children in the community, love them.
Recommendations 5. Employment Stakeholders including relevant
Ugandan Government Ministries to:
5.1 Promote access to employment for people with albinism, including accommodating their need for indoor work and access to disability grants, in line with the Government’s goal ‘To ensure that all Ugandans enjoy better standards of living, especially the disadvantaged and vulnerable groups’.
5.2 Take legal action under the Persons with Disabilities Act when employers discriminate against persons with albinism.
5.3 Ensure that persons with albinism have equal access to economic empowerment and social protection programmes such as the Uganda Women Entrepreneurship Programme, the Uganda Youth Livelihood Programme, the Disability Special Grant, and the national health insurance scheme. This should include disseminating information through organisations of persons with albinism, training employers and officials on the rights of persons with albinism and monitoring representation of persons with albinism.
Gertrude (journalist without albinism): People living with albinism live in so much poverty. People don’t give them jobs because they think you (PWA) cannot work. It’s not true.
Elizabeth (woman with albinism): The biggest challenge I have faced is most albinos never got the chance to go to school and it means the y don’t have good jobs or white collar jobs.
Peter (man with albinism): People with albinism often lack opportunities to take part in economic activities on an equal basis with other Ugandans, because of frequent discrimination from employers and others in the local economy. Many live in poverty.
Emma (friend of person with albinism): Discrimination at work place, like once there was a school we went with John [who has albinism] seeking for a job. I told one of trustees of the school about my friend with all qualifications needed for teaching and I was allowed to come along with him. On reaching we found her and she asked “Is this the person you have been telling us that you have? Do you want to scare our children? We won’t accept him, rather look for som eone else.”
THEME: Promoting access to education:
[TIER 1] National government The Ministry of Education should incorporate albinism awareness programmes into primary and secondary syllabuses.
National government should implement measures to address reported poor rates of school enrolment among children with albinism.
Ministry of Education should promote access to vocational college for people with albinism.
THEME: Promoting access to health services:
[TIER 1] National government The national government should allocate budget for sun lotion. Efforts should be made by national government to ensure people with albinism have equal access to mainstream health training and awareness services.
[TIER 2] Local government in coalition or collaboration with the community Special units for people with albinism should be established in hospitals under the authority of local leaders.
THEME: Promoting financial stability and employment:
[TIER 1] National government Cash support made available to poor households, such as support administered by the Tanzania Social Action Fund (TASAF), should prioritise people with albinism within these schemes. This prioritisation should not be impeded upon based on the assumption that complimentary NGO support exists for people with albinism.
Consideration at the national level should be given to financial assistance for people with albinism, which may take the form of tax credits or a disability allowance.
[TIER 2] Local government in coalition or collaboration with the community Local councils should promote access to council loans for people with albinism.
[TIER 3] People with albinism and their families Communities should assist people with albinism to be visible and active members of their society.
People with albinism should actively seek employment and related ways to achieve and maintain financial stability. It is recommended that people with albinism keep pursuing opportunities even if people attempt to isolate them. Testimony reveals the result is commonly that the individual becomes valued and community acceptance follows.
[ALL TIERS]
People with albinism’s access to start-up funds should be promoted, along-side training in financial management.
THEME: Promoting security:
[TIER 2] Local government in coalition or collaboration with the community Local Government Authorities should promote effective security measures which do not infringe upon the health or wellbeing of people with albinism in their area. Local government initiatives must be developed that enable people with albinism to continue interacting with their community while remaining safe; secure but free and non-restricted.
Local Government Authority security measures should be based upon consultation with people with albinism.
[TIER 3] People with albinism and their families Community should promote effective security measures which do not infringe upon the health or wellbeing of people with albinism in their area. Community initiatives must be developed that enable people with albinism to continue interacting with their community while remaining safe; secure but free and non-restricted.
THEME: Building awareness:
[TIER 2] Local government in coalition or collaboration with the community Local government should contribute to awareness-raising ensuring the younger generation are better informed, and that this momentum is built upon over time.
[TIER 3] People with albinism and their families People with albinism and their families should seek to understand and accept albinism, as a catalyst for shifts in wider community perspectives. Family members of people with albinism should be educated about albinism when a child with the condition is born, to enhance their own ability to pass this knowledge on to their children and wider community. It has been effective in some cases for people with albinism to join community groups, which provide entrance points for inclusion in the community.
[ALL TIERS] All stakeholders should tackle misconceptions, such as that people with albinism have weak skin and therefore cannot do manual tasks.
Strategies were a plenary discussion on the various types of genetic disorders which lead to a specific objective that students should be able to explain their causes and effects. An assessment criterion for this objective was How accurately can the student explain the causes and effects of genetic disorders?
The worked examples in the supporting handbook included albinism as an example of an inherited, recessive condition, with worked examples showing the possible genotypes of progeny from parents with or without albinism. While largely accurate, these would benefit from revision to present genetic information a more easily accessible fashion and to update the information. For example, this document states ‘1/20 000 can be an albino’ which is not true for Tanzania where the census in 2012 data indicate the frequency is about ten fold higher than this.
The explanation about albinism is clear and concise, with minor inaccuracies as shown from the quote below. It is good to indicate this is a condition that occurs in all animals the phenotype presented with light skin, hair and pink eyes is the appearance of someone with another type of albinism and is not the classic phenotype common in east African populations which is usually characterised by some residual pigment, with hazel or blue (not pink) eyes : Albinism is the absence of pigmentation in animals and plants. In (sic) human albinos are characterised by lack of melanin which is responsible for the dark colour of the skin, hair and iris of the eye. As a result the person (albino) has light skin, white hair and pink eyes. Albinism in an inherited disorder and is cause by a recessive gene.....
The Tanzanian Ministry of Education and Culture is be applauded for including albinism as a study topic at secondary school. There is evidence from our study that education and awareness about albinism has improved in recent years; this training at secondary school is one of the educational initiatives supporting this change.
The following recommendations are made to support the learning of albinism in Tanzania:
To include a simplified version of albinism for younger children so they are introduced to the idea of albinism as an inherited condition early in life
To introduce suitable teaching aids to support the Children’s booklet which has been translated into Swahili and other materials developed as part of this project would provide suitable teaching aid
To revise the section on albinism on the next revision of these booklets To continue to include data gathering on the frequency and distribution of albinism to update the 2012 census data; there is evidence that this is being done at local district and town level in Geita
The project team did not investigate the teaching in schools in Uganda; ideally this topic, of such importance to the region, should be integrated into the biology syllabus of all countries in east Africa.
