Connecting local responses around the world
Report by Clement Chacha and Margaret Musumbi
The African Albinism Network (AAN) is a Voice grantee for the Link and Learn project. The grantee aims to promote human rights advocacy the dignity and welfare of persons with albinism and their family. Standing Voice is AAN’s right holder which is based in Ukerewe Island in Lake Victoria. Standing Voice has established a training center named “Umoja Training Center”. The Umoja Training Centre (UTC) is a community space where people with and without albinism come together to develop skills, establish businesses and form positive relationships; somewhere to belong and grow, to claim a stake in society and embrace others’ differences. ‘Umoja’ is the Swahili word for ‘Unity’. So basically the center provides a place of belonging and growth for people with albinism. The center caters for livelihood initiatives that include: tailoring mart, batik production, live band entertainment, and video production, film, and photographs making.
The aim of the SALT visits was to learn and appreciate the various initiatives that are conducted by people with albinism communities as a means to address their challenges which include income-generation needs, and experiences of albinism-related stigma or social division, isolation and exclusion. The visit methodology was SALT that is to stimulate, appreciate, learn and transfer the experience gained from those initiatives. Our group also visited a family with person with albinism which typically experienced the discrimination, stigmatization, and ostracism for the mother who gave birth to a child with albinism.
Generally the visit was to learn the role of support organization, neighbours, and family on alleviating the challenges faced by people with albinism.
Members of the group included:
What is the name of this group and how many members?
The name of the group is Tupendane Tailoring group. Five (5) members of the group were present during the visit but generally the group is composed of 8 members (4 with albinism and 4 without albinism) and 6 are women and only 2 are men.
Who is present today?
What is the aim of your group?
The aim of this group is to enable us to have income for our living and get away from bagging (dependents).
Can you give a short history of your group?
The group is among the products of the Umoja Training Center. It was formulated in 2016 and officially registered by the government in 2019. Initially it was just like a congregating point where everyone was coming with her equipment or tools to make her own product. It was until 2020 when an instructor was brought in and taught us how to make hats special for people with albinism to protect them from direct sun rays. Generally the instructor has contributed a lot to our successes particularly in making quality products, we thank him very much. We also appreciate the support from Standing Voice which has made not only this group to realise great achievements, but also for other groups under this training center.
We produce about 30 hats a day which are sold for about 8,000 Tanzanian shillings (close to 4 dollars) and Standing Voice is our major buyer to supply for other persons with albinism outside Ukerewe Island.
What is the major achievement and what contributed to that achievement (how did you reach where you are?)
The major achievement is mainly economic gain. From this activity we are able to financially support ourselves and our families. We reached where we are through the support of Standing Voice, the instructor and our own commitment, efforts, and self-motivation.
The other achievement is the major changes which we have experienced from isolation, stigma, oppression, and social distancing which for us has dwindled significantly because we are no longer dependent on others. “If you are economically strong you can hardly be stigmatized or isolated.” Instead the person with albinism who is economically weak or dependent is at a great risk for isolation, stigmatization, exclusion and persecution.
What are the experiences you can share related to your challenges and the way you overcame them?
“I was making and selling snacks, but customers were not coming to buy even if they were finished from other sellers. Those few who tested my product and found them to be excellent and tasty gave me conditions including not touching the snacks in any form instead they were serving themselves”. Asteria.
“When I joined the tailoring training school, my fellow trainees were laughing at me, especially during threading the needle, because of my low vision I was unable to see the needles’ hole. No one was ready to assist because they were not willing to share anything with me. I felt very disgusted and at one time I was about to quit the training, but my instructor came to my rescue because he intervened to stop any kind of malpractice and stigma against me. Later it was proved that I was the best student because my performance was excellent. They were forced to accept that but never appreciated fully, but to me it was a consolation and I felt proud of that." Florentina.
"When I started my career, I was subject to a very poor market despite making better quality than other tailors. People were scared to buy my products simply because of my albinism condition. Furthermore, the place I rented my colleagues wanted me to leave because they claimed I was scaring people to come there. Although the owner, who was my relative, refused their claim, the pressure was too much and I later decided to leave. But I never despaired. I continued working from other places and slowly people appreciated my products although it took longer time to reach there." Florentina.
Currently the level of stigma and persecution has lowered significantly to me because now they appreciate the quality of my product and customers are coming to buy. But it started by getting away from dependency and later people started trusting and appreciating what I do. You see now neighbours can come to me and request salt or other beverages because they know I have the capacity of possessing them because I have money, so those one cannot stigmatize, isolate or persecute me. Neema
A neighbour passed away so we went to mourn with a group of friends. But the time for preparing food they refused me to participate claiming that mourners will refuse to eat. I could not imagine those were the people who claimed to be my friends and company mates. I felt bad and left the place. But with my friend we planned to overcome that stigma which we later succeeded. Florantina.
The other time we went for mourning ceremonies and with my colleagues who are persons with albinism rushed to the kitchen to start preparing food. We wanted to see if truly people will refuse to eat or touch the utensils we have touched. There was no option that day. People accepted the meal we prepared and we felt it was a victory against stigma. Neema.
With the experience you obtained, what message you can share to other persons with albinism?
What is your dream on this livelihood initiative? (what are you envisaging to see in a near future)
This entertainment group is known as the Tanzania Albinism Collective.
During the visit, we met 3 members of 4.
The group started in 2017.
What is the aim?
The aim is to educate people about albinism and at the same time entertain them.
How many Members?
Founder Members of the group were 5, but currently we have remained
What are the achievements and what contributed to those achievements?
We have composed many songs and have uploaded them in You tube, however there are not many followers. The backborn of our achievement is the support from Standing Voice and secondly our determination, inspirations and talents. We also believe that through music we can educate many people on albinism so that they get away from myths and misconceptions against albinism. Standing Voice has supported us in many avenues and are continuing to do so, we appreciate their support.
Where do you see yourself in years ahead?
Our dream is to secure a platform to perform during national festivals so that we can be seen and heard by many people live and through different media. This is a good way of making us popular. As we get popular people will learn and hear much about albinism and that will make them change their mind set.
We also want to visit schools and perform and deliver messages about albinism to the young generation so that they don’t fall into the myth and misconception about albinism.
Why not start performing in public places in Ukerewe and making yourself popular at home (charity starts at home)?
That is a good idea, maybe we haven’t thought about that, we will work on it.
Can you share a brief story about your son Vedastus who was born with albinism?
I am Evedina Zangule. I am a mother to Vedastus who is a person with albinism. He was born on Sunday 2nd, August, 1994. I was informed by the birth attendant that my newly born child is with albinism but she encouraged me not to be scared. The relative of my husband who were present advised me to secretly kill the child instantly because the child is a curse but I hesitated. As a result of my refusal I was not allowed to enter my home and was chased away with my newly born child. I was told by my husband’s siblings that no one in their family will marry or get married if that child is allowed into their home and will cause people to die.
What happened after being chased from home?
My expulsion led me to stay in a nearby mountain and was getting food from my aunt but the aunt was not allowing me to live there but only eat and leave.
What other challenges did you encounter during the moments of raising up your albinism child?
The time of raising Vedastus I went through very difficult moments including
How did you overcome that intimidating situation?
I was informed of the existence of an organization called standing voice. I contacted them and took my child Vedastus to school (primary school) and post primary school studies and was responsible for all costs and other requirements. My success and that of my child was made possible by Standing Voice. Standing Voice also gave me the courage and financial support which made me secure a permanent residence and money to earn a living.
Do you have any message to share on the experience you got when going through those difficult moments?
What I you doing now as your contribution to alleviate the challenges faced with persons with albinism and their families?
My experience has led me to join a women's group in which we respond to any child born with albinism to provide support and encouragement to overcome the situation I experienced. We have managed to rescue several mothers and children and recently we managed to reunite the wife who was rejected by her husband because of giving birth to a child with albinism. Our group has been popular in such a way that no woman in this Island who gives birth to a child with albinism will miss contacting us for support and family stabilization. We are proud that we are doing this task successfully.
What are your conclusive remarks?
Stigma against persons with albinism is still strong although to some extent it is lessening as we put efforts to overcome it. We need to double the efforts and bring in many players to join hands.
Chrispine…. Standing Voice
Naila Omari…..film maker
MUSSA……..TANZANIA ALBINISM SOCIETY
The team visited Jackson, 24 years old father of Nickson and Nickson's mother, 20 years old.
The story shared was that last year 27thNov 2022 Nickson was born with albinism. The family and the whole village was shocked by this. The beliefs and myths around ALBINISM in that village are that:
Those things were terrifying to Jackson so he chased the wife and the child. The wife went back to her parents.
In the cause of time it was reported to the government authorities what Jackson had done and he was arrested. While under arrest he got someone who gave him information and awareness concerning people with ALBINISM. Also Standing Voice staff (Chrispine) came into the picture and gave him more awareness. What followed is that Jackson reconciled with his wife. Standing Voice organized an awareness meeting in Jackso's village. The community meeting was like a turning point for the family and members of the community because from that time on relationships in family have improved as you can see on the home visit, and attitudes towards persons with ALBINISM changed. Nickson is the only child with ALBINISM in that village. There is acceptance today. The mother joined a group that meets at the Umoja Community cCnter, Ukerewe where she is getting more awareness and education.
Jackson showed a great change of his way of thinking and readiness to care for his family.
Reflection after SALT visit
What went well (How was the visit, what was inspiring? what was helpful for the conversation)
How can we improve next time?
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