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Meet Olive Namutebi, a Human Rights Defender Passionate about Rights of People Living with Albinism

She founded Albinism Umbrella, an organization that protects interests of people living with albinism.

Meet Olive Namutebi, a human rights defender. In 2016 she founded Albinism Umbrella, an organization that engages the community to promote and protect interests of people living with albinism. Four years down the road, she and her team are on their way to creating an albinism center. They have also supported the first ever person with albinism to be employed by the Parliament of Uganda.

Who is Olive Namutebi?

Olive is a female human rights defender for persons with albinism in Uganda and the globe at large. She hates social injustice in all its forms and has a vision where all persons with albinism live dignified lives and fulfill their potential.

She is a qualified Accountant and a member of ACCA- Association of Certified Chartered Accountant as well as CPA Uganda. She acquired a Bachelor of Commerce degree from Makerere University with a major in Accounting. She also holds several certificates that include research from MasterCard Foundation, Public speaking from British Council and others in Accounting and Auditing.

Olive Namutebi

Namutebi’s career began at World Vision Microfinance affiliate by then called MED-Net which is currently called Vision Fund. She was the branch Accountant for the Kampala office for three years before moving  to the Uganda Society for Disabled Children (USDC), where she was the Internal Auditor. It was during her time at this disability NGO when the dream to start her own was conceived.

 As a young woman, this was short lived and she moved to Chevron Uganda (Caltex) where she was in charge of Planning and Reporting. Upon its decision to exit Uganda, she moved to Post Bank Uganda as their Manager for Business Development and Strategic Planning. While at the bank for seven years, she held two other positions; Manager Internal Audit and Risk Manager, before she exited to form Albinism Umbrella.

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Challenges

I was raised by a single mother and that alone spells its own challenges. Finances were merger and we lived a very modest life.  The main challenge was being a misfit in society. I always battled with acceptance in any particular location. It was very frustrating going to school with a cloud of kids hurling insults and following as they sang all manner of songs. While the school environment provided protection from bullying, my poor sight also posed an additional challenge. I could not read the letters on the blackboard and often asked a colleague to read for me. This was not always a positive until when I got a good friend who totally loved me and helped me whenever I needed help.

At my first job, christian values were the foundation and this somehow shielded me. It was obvious that some workmates viewed me differently and I often saw their mixed reactions. My boss was accommodative and I did my best to prove that I could deliver beyond expectation. In my entire work history, it’s only once when a supervisor used the excuse of albinism that it would not allow me to handle my duties at work.

Founding Albinism Umbrella

As stated above, the desire to give back to my community was conceived while at USDC. The seed germinated after media stories that showed that I had  achieved more than my peers. I then realized that I was more blessed and needed to do something for the majority of persons with albinism who were in dire need of everything including life itself. Albinism Umbrella was opened in 2016 and officially registered in Feb 2017.

Some of the accomplishments made to date include the following

  1. We have profiled over 25 persons with albinism in Eastern Uganda with support from Oxfam Uganda. This was scientific research carried out in 2018/2019.
  2. Albinism Umbrella is also proud of its desire to create an albinism center which idea was taken over by the Parliament of Uganda. Four fund-raising walks have since been held to raise funds towards this cause.
  3. The first ever person with albinism to be employed by the Government of Uganda was supported by Albinism Umbrella. In her speech on 5th February 2017, the Rt Hon Speaker made a promise to employ a person with albinism, it was the work of Albinism Umbrella to pursue this promise and it was fulfilled in 2018.
  4. AU has also expanded with now seven CBOs in different districts of Kayunga, Masaka, Luweero, Lira, Bududa, Mubende and Kabale.
  5. AU won a legal battle with a school which discriminated against a child with albinism in 2019.
  6. We have been able to commemorate the International Albinism Awareness Day for the past four years since its inception in 2015. It should be noted that my work with the albinism fraternity started way back while at Post Bank in 2009. I worked with African Albino Foundation then and carried out several outreach clinks and home visits.

Some of misconceptions people have of persons with albinism that she would like to demystify

  • Persons with albinism (PWA) do not die but disappear
  • Having carnal knowledge of PWA cures HIV/AIDS
  • PWA can see clearly in the dark
  • PWA do not suffer from malaria
  • PWA have magical powers and bring wealth when sacrificed
  • PWA always have children with albinism
  • Albinism is contagious
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These are some few examples, but it should be noted that there are as many myths and misconceptions about albinism as they are tribes in Uganda.

Her son

I am raising my son as normal as I possibly can. He is still young but I have exposed him to other PWA and he understands that they are people with different abilities. A case in point are the sign language interpreters he sees around and now knows that some people having hearing challenges.

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