Throughout her career as a primary school teacher, my mother has always been known for her generosity, compassion, and kindness. My mother is a retired primary school teacher at the Mwereni Primary School, one of the few public primary schools that accept children with disabilities and those born with albinism.

Whenever I had a holiday, my mom would take me to her school. I got to see her shine in her element as she would go out of her way to make sure that every child especially those with albinism and those with other disabilities feel included and supported in the classroom. She would provide her students with specialized learning materials, such as large-print textbooks, braille writers and visual aids to help them see better. She also took extra time out of her schedule to tutor some of the students who were struggling in class so they can get better grades. 

Beyond the classroom, my mother has been a strong advocate for people with albinism. She has at numerous times donated her time and resources to provide extra care for those students with albinism, who are more prone to skin cancer and other disease and are most likely at times to drop off from school.

Above all she made sure to educate them about their condition and to encourage every other student to be supportive of their classmates. She would always encourage all her students to work together in assignments without discrimination. My mother's kindness and dedication to people with albinism and with other disabilities has made a profound impact on our family. It has forever shaped how I choose to see the world especially when it comes to people who are often side-lined in the society.

She sounds awesome right? Well, that’s not all…

I started fasting when I was 8 years old and as far as I can remember, we always had students breaking fast with us at home. During the month of Ramadhan, my mother would come back home from a full day’s work, and she would prepare iftar for us and for the kids at the school. This was because the students with disabilities were boarding students and they didn’t have anyone to make their iftar meals in the school. When my mom found out she willingly volunteer to prepare their meals EVERY-SINGLE-DAY for 30 days for about 12 years of her career as a teacher.

We would fast the whole month together and my mom would cook special “Pilau” for us on the day of Eid. Through that I made the first few friends in my life, and yes, they are really cool! Through these friendships, I have gained a deeper understanding of the challenges they face in society and the incredible resilience they possess.

I have learned from an early age that albinism is not a disability, but rather a genetic condition that affects the production of melanin, which gives colour to the skin, hair, and eyes. I also learned that children with albinism and those with disabilities are just as talented, smart, and most importantly fun just like any other kids.

What is AAN?

The African Albinism Network (AAN) is a non-profit organization that aims to improve the lives of people living with albinism in Africa. People with albinism often face discrimination, social exclusion, and health problems due to their condition.

The organization provides education and information about albinism to communities, governments, and health professionals, as well as advocating for the rights and needs of people with albinism, helping to break down barriers and combat discrimination.

The work of AAN is therefore vital in promoting greater understanding and acceptance of albinism in African societies, as well as supporting the health and well-being of people with this condition. Through its advocacy, education, and support programs, AAN is making a real difference in the lives of people with albinism across the continent.

Passion meets purpose:

There are a few precious moments in life when what you are passionate about, and what you do for work coincide. This year I got an opportunity to work as a rapporteur for a 3-day forum called the AAN Forum 2023 and later on as a strategy analyst for their 8-year strategic plan. The forum was hosted in Dar es Salaam, with 36 albinism groups from across 13 African countries in attendance. I had an unforgettable experience meeting people from countries I have only seen on a map like Togo, Madagascar, Mali, and many more…

My role as a rapporteur involved attending various sessions and lectures and summarizing the key points and takeaways into a comprehensive report. This allowed me to interact with different experts, ask questions, and gain a deeper understanding of the topics discussed.

One of the most memorable aspects of the forum was the sense of community among the attendees. Despite the vast array of backgrounds and experiences, everyone shared a passion for improving and advancing the cause of people with albinism in Africa.

The forum provided a unique opportunity for albinism groups across Africa to learn from each other, share perspectives as well as receive training from the Network and its partners. The emphasis of this year’s forum was how AAN can support African countries implement the AU Plan of Action through the development of country-equivalents i.e., National Action Plans on albinism (“NAPs”).

National Action plans:

National Action Plans (NAPs) for people with albinism in African countries are critical in advocating for and protecting the rights of this marginalized group. Basically, NAPs hold those with power (government) accountable to administer, protect and serve people with albinism either through social services provision, law enforcement, or infrastructure support.

As of now, in Africa so far only 3 countries (Uganda, Mozambique and Malawi) have fully adopted their National Action plans with 2 more countries expected to do so in 2023 (Tanzania and Kenya). This shows the extent of the journey that is left to achieve 100% adoption of the AU Plan of Action in Africa.

Once these plans have been fully adopted they will lead to numerous milestones for PWAs, including increased public awareness, improved access to healthcare, education, and employment opportunities, and the enactment of laws to prosecute those who commit crimes against people with albinism.

Challenges faced by PWAs.

Being at the AAN Forum I was able to obtain a broader perspective on the extent of the challenges faced by PWAs in Africa. People with albinism face a range of challenges in Africa, including social, economic, and health-related challenges. These challenges are often the result of a lack of understanding and education about their condition, as well as deeply ingrained cultural beliefs and superstitions.

Discrimination and Stigma: People with albinism in Africa often face discrimination and stigma, which can lead to social exclusion, isolation, and even violence. In some communities, they are believed to be cursed, and their body parts are thought to have magical powers. This has led to the targeted killing and mutilation of people with albinism in some African countries including Tanzania.

Lack of Access to Education and Employment: Many people with albinism in Africa do not have access to education or employment opportunities, which can limit their ability to lead independent and fulfilling lives. This is often due to a lack of accommodation and support for their visual impairment, as well as discrimination and stigma.

Health Risks: People with albinism are more vulnerable to skin cancer and other health problems due to their lack of melanin. In Africa, where many people work outdoors and are exposed to intense sunlight, this risk is even higher. However, many people with albinism do not have access to sun protection or proper healthcare.

Limited Representation: Despite their challenges, people with albinism are often underrepresented in the government, media, and other spheres of public life. This limits their ability to advocate for their rights and raise awareness about the challenges they face.

According to a report by the United Nations, there have been at least 700 reported cases of attacks on people with albinism in Africa since 2006, with many more cases likely going unreported. In Tanzania alone, it is estimated that up to one in every 1,400 people has albinism.

Take aways and way forward:

As established, we have a long way to go so the question is, what can you do to advance the cause of equal rights for people with albinism?

Be Involved: Would you happen to know how many people with albinism are in your community at the moment? How much is sunscreen lotion? If your answer to any of those questions was no, then you know you have work to do. You need to be more involved and take an active part in the lives of people with albinism. Continue to be in their circles to better understand their challenges and be a “friend in need” whenever they need your support. Contribute to fundraising efforts that support research and advocacy for people with albinism. This could include donating money or volunteering your time to organizations that work towards this cause.

Be an Advocate: One way to help is to raise awareness about the issue. You could use social media platforms, blogs, or other means to share stories and information about the challenges faced by people with albinism in your community. This can help to educate others and build a more empathetic and supportive community.

Be the Change: Another important role you could play is to advocate for policy changes. This could involve working with local or national lawmakers to introduce laws that protect the rights of people with albinism, or lobbying for increased funding for programs that support them. Challenge negative attitudes and beliefs about people with albinism when you encounter them. Speak out against harmful language and behaviour and encourage others to do the same.

Be an Activist: You could also support organizations that work directly with people with albinism. These organizations provide services such as education, healthcare, and job training, as well as advocacy and legal support. By donating or participating in their events or volunteering your time, you can make a difference in the lives of people with albinism.

In conclusion, there are many ways to support the cause of discrimination against people with albinism. Whether through raising awareness, advocating for policy changes, or supporting organizations that work with people with albinism, your efforts can make a real difference in the lives of those affected by this issue.

A word of thanks

There are a few people who get the unique opportunity to work for a cause they are passionate about, I count myself lucky to work with AAN, a team of passionate, dedicated, and fun people who are absolute experts in their craft. These are the unsung heroes of people of Albinism everywhere.

I couldn’t be thankful enough to my team (the Advisory team) for all the wonderful work they do off and on the scene. I appreciate having worked with Amani and Joanna (two awesome managers) who allowed me to learn, support and most importantly take part in what I consider the best experience in 2 years of working at Empower.

I believe the little contribution I made to the AAN forum: capturing all comments, questions, and discussions will serve as a stepping stone and reference point towards advancing this cause that I am so deeply passionate about. 

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Written by

Sued Msami

I prefer to let my written words express more than what my spoken words could. Passionate about monotheism, storytelling, space exploration and creating a genuine human connection through art and literature.

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