BUILDING RESILIENT FUTURES FOR PEOPLE WITH ALBINISM (PWA)
Persons with Albinism (PWA) are one group of many who are marginalised through the tendency of human beings to categorise ourselves along the lines of difference and sameness. The boundaries we construct are molded by families, leaders, communities and friends and although often subconscious, they affect our behaviour and influence our decisions. Individual acts of discrimination against those who are not considered to ‘belong’ within a community are informed by group-based stereotypes. These acts of discrimination not only isolate the victims but also contribute to their disempowerment and their feelings of discrimination.
It is the intention of Khulisa Social Solutions (Khulisa) and implementing partner, the Miss Albinism Trust, Zimbabwe (MAZT) to find a solution that develops structures and behaviours of inclusion and belonging. Through the implementation and roll-out of Khulisa’s tried and tested storytelling, resilience and community engagement processes, jointly we aim we pursue the creation of human connection and the development of resilience, recognising that by providing a space to come together, listen, learn, and unite we create a powerful alternative to the “dominant group culture“. The stories of PWAs will not only embrace our collective humanity, but also enable us to identify challenges faced by those in the community who have been rejected or marginalised. By exploring these challenges the partnership will work with the community to design viable solutions.
The purpose of this proposal is to seek funding for a prototype programme initially to be run in Harare, Zimbabwe over a period of six months, aimed at creating structures of inclusion for People with Albinism (PWA). The funding we are seeking for the establishment of this pioneering process is estimated at US $55,000.
The goal of the two-day workshop was aimed at providing people with Albinism the opportunity to focus on “what’s right in their lives versus what’s wrong”. This enabled us to appreciate what they have overcome in their lives and to celebrate the significant strengths they have developed as a result of their adversity.
As part of the workshop the 22 participants identified the following as the positive core of PWA in Zimbabwe:
- People living with Albinism are hardworking due to the need to prove themselves to people.
- People living with Albinism are successful in whatever field they are engaged because they don’t give up.
- Nothing for us without us!
- People living with Albinism’s uniqueness is that they are resilient and work towards reaching their dreams and goals despite their difficulties.
- People living with Albinism need to lead platforms that create space for inclusion in various social and corporate spaces to ensure integration into society and create a sense of belonging throughout.
The participants visually depicted their dreams for PWA through the following images:
- An armoured fighting vehicle – “People shoot at us but we have a protective shield. People notice us because we are unique, we are unshakable and unmoveable.”
- A rainbow with heading – “The rainbow presents that the storm is over, as PWA know the sun will always come out and shine. In our difference we are unique. We stand out from afar. It doesn’t matter what storms we face, we always come out shining!”
- A butterfly – “PWA is like being butterflies, naturally beautiful, and nobody can ignore us. When given the platform we can fly higher and higher like butterflies.”
According to Diane Coutu (2002), resilience is a combination of the following three capacities:
- Facing Reality
In situations of despair and hopelessness, the best way to cope is to face reality rather than having unrealistic expectations. If we expect things to get better soon, we may lose the energy and hope when a situation does not change quickly enough. Therefore, in difficult situations, facing and accepting reality may create a better basis to endure hardship for the time it lasts.
In working with people living with Albinism over the past two days Khulisa were amazed at how they understand the challenges/adversities they are facing on a daily basis. It seems as though this is one of the ways that makes them so strong.
- Searching for Meaning
Being able to find meaning even when facing a fate that cannot be changed is at the core of resilience. Having a purpose in life is one of the five pillars of Seligman’s PERMA model of happiness (Slavin, Schindler, Chibnall, Fendell, & Shoss, 2012). Helping people to find or create meaning strengthens their level of resilience.
PWAs seem to use the challenges/adversities they are facing as a springboard to create meaning in their lives. This is a sign of Post Traumatic Growth (PTG). PWA find it easy to relate to other people, they always find new possibilities, they have immense personal strength, they are spiritual in nature and they appreciate life! Therefore, they have meaning in their lives. This translates into having a purpose in life and this creates happiness.
The ability to deal with a situation with whatever we have at hand is a strong predictor of our ability to bounce back from adversity. It is not so much the tools we are given, but the ability to improvise and find new ways to reach a goal.
PWA are the most innovative individuals Khulisa have engaged with over the past 21 years. They always find innovative ways to deal with their challenges.
Khulisa Social Solutions met with a group of academics from Zimbabwe (Juliet to give info from where they came) to discuss the feedback from this first participatory research workshop with PWA on 12 September 2018. The conclusions they came to were:
It seems as though resilience is almost an innate trait for PWA. It is this ability to create meaning out of adversity that PWA can share with the world, other vulnerable groups and people in general
Compiled by Nanette Minnaar
(Masters in Developmental Studies, more than 25 years’ experience in development and training of strength-based intervention in working with vulnerable groups).
This proto-type project is a joint initiative between The Miss Albinism Trust (MAZT) founded by Brenda Mudzimu and Khulisa Social Solutions (KSS) – a not-for-profit organisation based in South Africa with a 21-year history of addressing issues in marginalised communities. KSS has sister companies in England, Australia and imminently in the United States. KSS has also worked in several African countries, specifically in collaboration with its global ambassador, South Africa’s iconic performer, PJ Powers.
Recap Appreciative Inquiry:
The first day themed – Celebrating being One of a Kind – kicked off with participants sharing their connection with nature in very unique ways. One person living with Albinism shared that she is like water: “just like water I can take on any shape, I will fit in where ever you put me, that is what we do”.
After interviewing each other, focussing on the value living with Albinism brings to their lives and the wishes and hopes they have for PWA, they had to identify the positive core of people living with Albinism.
In summary they shared the following:
- Our uniqueness is that we are resilient and we work towards reaching our dreams and goals despite our difficulties.
- We recognize where the attacks on Albinism are coming from and we need to lead the call to action to tackle the problem head on.
- Mainstream media is slowly recognizing issues that affect PWA and we need to leverage these platforms to ensure the media representation reflects us in a normalized way.
- PWAs need to lead platforms that create space of inclusion in various social and corporate spaces to insure integration into society and create a sense of belonging throughout.
- Nothing for us without us.
- We are the anchor to create positive change that can have positive impact.
- PWAs are generally gifted intellectually and artistically.
- Our physical appearance makes us unique and we draw attention in a positive way.
- PWAs are a living testimony that disability doesn’t mean inability!
The day ended with a very emotional recap by all participants and the realisation that: “…there is beauty in Albinism that can be seen by positive minds” (The Uhurus group’s feedback).