Persons with Albinism in Malawi: Promoting an Inclusive Future for All Ages
Member-led and Malawi-led, this online event came about through a proposal from SCIAF's Malawi Programme Officer, Chris MacLullich and from a shared, deep-rooted concern for and interest in the wellbeing of people with albinism in Malawi.
The risk to the safety and security of persons with albinism can increase around the time of elections due to superstitious beliefs that electoral success can be influenced by ritualistic killings and the body parts of persons with albinism. Ahead of the 2025 Presidential and Parliamentary elections, this meeting was timely in seeking to raise awareness and take action to uphold the human rights of people with albinism and to dispel the myths that underlie discrimination and violence.
The meeting was opened by the SMP’s Deputy CEO, Chad Morse. Chris set the scene, explaining that the aim of the session was to draw from the lived experiences of persons with albinism and from projects that aim to provide support in different ways, recognising that people with albinism can experience persecution from birth and throughout different stages of their lives.
It is estimated that there are 135,000 persons with albinism in Malawi, 85% of whom live in poverty and are likely to experience discrimination, violence, exclusion from education and employment and social protection programmes, and difficulty in meeting health-related needs.
The presentations would share how vital it is to replace discriminatory attitudes with a positive appreciation of the capabilities of people with albinism and explore how they can be supported to build the self-confidence that will enable them to participate in and contribute more fully to Society and enjoy their rights.
Tuntu Simwimba, Programme Officer for the Catholic Commission for Justice and Peace, Malawi reflected that since 2014, over 200 people with albinism had been subjected to stigma, persecution, attack, injury or death. He explained the range of superstitious beliefs behind this, noting that they came from deep societal issues. He explored the contribution to this grave problem of colonialism, including its use of language and transplantation of laws, concluding that the abuses arise from multiple factors before, during and after colonialism. There is a gender dimension, Tuntu explained with structural segregation and physical strength making women and girls with albinism easier targets for abduction.
Tuntu spoke of his organisation’s projects which find that the higher the socio-economic capital of people with albinism, the more integrated they are into communities. The projects had therefore focused on skills development, taking into account that eyesight can be challenged for people with albinism and that there are also needs for greater protection from the sun for sensitive skin. Success in the development of business skills through support for people with albinism was being followed up with courses on savings and loans. Once empowered, people with albinism were then passing on their knowledge through a mentorship programme. There remains, Tunti emphasised, a strong need for protection and access to justice.
Elita Chamdimba a Research Fellow and PhD student in Social Work at the University of Strathclyde spoke of her work on the lived experience of children and young people with albinism. The focus of her presentation would be on her research into how children and young people with albinism develop a sense of belonging, (exploring enablers) and how to amplify their voices, through a participatory approach. Elita underlined the key role played in the design and safeguarding aspects of her study by members of the Association of People with Albinism.
The themes of Elita’s findings were drawn from the young people’s insightful poems and revealing drawings. They emphasised that vital factors to them are a sense of belonging and safety and all underlined the challenges they experience with visual impairment. The important role of peers and teachers came through, with the attitude of teachers being willing to make reasonable, low or no-cost adjustments in lessons to make them more inclusive for learners with albinism, such as writing on chalk boards being large enough to be legible.
Elita showed the meeting a girl’s drawing of a football pitch surrounded by trees and a fence – the trees providing much-needed shade for sensitive skin and the fence, security. This was an aspirational scene illustrative of something needed and desired for children with albinism in Malawi to take part in one aspect of a full and inclusive school experience.
There was a gender dimension in Elita’s findings around bullying, with girls with albinism likely to experience stigma through language, name-calling and exclusion, whereas boys were more prone to experience physical violence. Family members, Elita found, provide key support to their children with albinism in providing positive labels. To what extent, Elita wondered, are we leveraging such micro-level support. Elita concluded by recommending the film “Can You See Us?”, available on Netflix. See the trailer here
Bonface Massah, Malawi Human Rights Commissioner
Commissioner Massah opened by saying that we need to explore how to restore the rights of people with albinism, recover from the setbacks described by the previous speakers and create a positive future for people with albinism. The starting point, he said is of course to condemn any attacks on and killings of people with albinism. He explored whether the 2014 violence in Tanzania, Mozambique and Zambia had shifted to Malawi or whether it was already there. Looking at Malawi’s laws, Bonface said that work to strengthen them meant that it now has adequate legal instruments to tackle abuses of people with albinism. He said we must ensure that people with albinism have a voice and that we protect their opportunities to be heard. Campaigners for people with albinism have been involved in a national and regional approach, providing context to the Government of Malawi. There is an essential monitoring role played by the Malawi Human Rights Commission and the other campaigning bodies to which Bonface belongs in contributing to a national Action Plan which is critical in holding governments to account. People with albinism must be able to be core to the fight and be protected to do so. Society must, Bonface said, address the needs of the victims of attacks and help secure a future for people with albinism to enjoy their rights. Immediate psych-social support for victims is still missing in Malawi and other countries. People with albinism need to be accommodated in mainstream civil society spaces, Bonface said.
Tuntufye Juma, Programme Manager for Standing Voice introduced their collaborative multi-institutional (Standing Voice, the University of Glasgow and Malawi’s Ministry of Health), multi-method study in which a participatory approach (a common thread through the session) was important. Albinism, she began, remains widely misunderstood. The study sought to explore:
- the challenges facing children and young people and the implications for psycho-social wellbeing
- what level of albinism literacy exists amongst parents and caregivers and their understanding of needs
- how positive change can be achieved for multiple beneficiaries.
Dr Chris Hand, Senior Lecturer at the University of Glasgow explained that there are lots of reasons to feel positive about the young people’s emotional feedback. However, there were also neutral and negative responses with reports of instances of bullying and name-calling. The young people’s experience of social media was also mixed. There was generally positivity around the experiences of participating in learning but also experiences of bullying.
The young people’s responses reflected lots of agreement in the top ranking of school, friends and family as positive areas of importance. However, when asked to look ahead anticipating their lives beyond school, there were concerns about their future wellbeing and around work.
Live Recording
Missed this meeting? You can find the recording on this page with the below time stamps.
00:00 Welcome from SMP Chad Morse, Deputy CEO
00:04:10 Chair’s opening comments Chris MacLullich, Programme Officer (Malawi)
SCIAF (Scottish Catholic International Aid Fund)
00:08:00 Albinism and Social Justice Tuntu Simwimba, Programme Officer, Catholic
Commission for Justice and Peace - Malawi
00:25:00 Research findings on education experiences of children with albinism in Malawi
Elita Chamdimba - Research Fellow PhD student in Social Work, University of Strathclyde
00:38:00 Confronting Discrimination, Promoting Equity Bonface Massah, Commissioner, Malawi Human Rights Commission (MHRC)
00:50:00 Exploring freedom and human rights of children and young persons with albinism in Central Region of Malawi Tuntufye Juma, Programme Manager, Standing Voice Dr Chris Hand, Senior Lecturer, University of Glasgow Dr Paul Lynch, Reader, University of Glasgow
01:07:00 Members’ comments, questions and contributions All attendees
01:25:00 Closing remarks Stuart Brown, CEO, SMP
Resources
Follow this link to the Agenda.
A link to the meeting chat is available here.
Elita Chamdimba's presentation can be found here.
A link to PAVE presentation is here.
Here is a link to a video created by SCIAF: Fighting for rights: Supporting people with Albinism in Malawi
Link to Netflix film: Can you see us?