For people with albinism to succeed, there should be a support system
Living with a disability is not easy and when his disability comes with many challenges such as stigma and discrimination it is even worse. Olive Namutebi experienced these first hand. It was also at a time where disability was viewed as a curse. However, it was the media attention she got as a manager at Post Bank that made her realise she had achieved quiet more than the rest of her peers.
In her journey, Namutebi had briefly worked with an organisation; Uganda Society of Disabled Children and there, a seed was sown; opening her eyes to other less privileged persons. At the bank, Namutebi and friends made it a practice to visit homes of people with albinism.
“I also partnered with African Albino Foundation Uganda; where I was a member, teaming up with some doctors to help us with albinism. This mainly happened on weekends where we sought out people in small pockets in various communities.”
Summarily, Albinism Umbrella was born when UN declared the International Albinism Awareness Day. That was because inasmuch as they were doing all these small things, getting international recognition on June 13, 2015 was the real spark.
Many people with albinism suffer immense neglect from family and it was not any different for Namutebi who was also a product of teenage pregnancy. The stigma was more than doubled when the pregnancy brought forth a child with albinism because her father abandoned the family. For standing with her through thick and thin, Namutebi thanks her mother, her biggest hero. First forward, going to school was another nightmare because it was opening her to a new community.
“When we settle into a community, we tend to feel comfortable because exploring other places and building new relationships is terrifying. As such, going to school was breaking my boundary as I had to meet new characters. Here, I suffered bullying where some pinched me since I could not see them well. I was also marginalised since I feared to speak up. For example, I could not even tell the teacher that I needed to sit at the front of the class owing to short-sightedness. Therefore, Nursery to Primary Four was a nightmare, so much that by Primary Five, I told mother I was done with education. However, she encouraged me to push on.”
True to her mother’s love for a brighter future for her, Namutebi was transferred from a public school to a private one. With less numbers to deal with, education got less frustrating.
The organisation journey
Starting Albinism Umbrella was tough because at that time, she totally pulled out of formal employment, leaving behind a manager level salary and the pecks and benefits that followed. Nonetheless, she had believed beyond doubt that this was her calling.
“After the Parliamentary walk with Hon Rebecca Kadaga, the speaker of Parliament then, a friend advised that we needed a home if we were to be taken seriously. I borrowed Shs3m to secure furniture and to pay rent. So, while we feared being called a briefcase organisation, we are glad we did. With a belief that I ought to aim for the sun so that at my worst I fall in the stars, resilience has kept me going.”
That said, the umbrella needed a helping hand to advance its advocacy. So, the next target was to get organisations such as Oxfam on board. However, the requirements were beyond what a young two-person organisation would fulfil thus partnering with another company as their parent company in order to present their proposal. Unfortunately, on doing due diligence, the parent company failed woefully.
“It felt like our world had crumbled with all our hopes. Then the tides changed to carry us forward when they chose to give us a try in what I call a seed-grant. I guess the saying, “do not throw the child with the birth water” came into play because while we had a good idea, the parent company was bad. I thank God they took a chance with us because when Oxfam came on board, many things began to take shape.”
With Oxfam, they were able to carry out a spatial mapping of people with albinism. That is because they knew that regardless of their efforts, being unaware of who and where their target audience are made convincing anybody else about their worth difficult. “Data was important and the spatial mapping was done in 2018/19. As of 2021, we had done a sample investigation throughout the country. I am thankful that Oxfam is still holding our hand.”
Partners are also a big arm to their success and one of these is UN Human Rights which has really helped them in celebrating the International Albinism Awareness day. “The other is the former speaker of Parliament of Uganda Rebecca whose acceptance to engage in a fundraising walk with us gave us a lot of visibility. There is also Equal Opportunities Commission which adds to our portfolio and adds weight to our presence.”
Having people with albinism speak for themselves is rewarding. In the last election, five people were elected to different positions. “This is really good. Moreover, we have also expanded from two to seven staff at office.”
Additionally, media is starting to report better about people with albinism because, in years past, some publications had really bad pictures which did not please Namutebi. “In my mind, I knew it cannot all be this bad. At Albinism Umbrella, one of our goals is to change the narrative; look at the positive side of life. We are glad that media houses are picking it up.”
Ignorance is the biggest obstacle they face. To that effect, they have trained Village Health Teams in six sub-counties in Luwero District.
Being a part of National Union of Disabled Persons of Uganda (NUDIPU) is a triumph worth celebrating seeing that they have only been making five years yet are already part of the national body.
People with albinism have also been noticed by the Ministry of Education and Sports, something that started with a case of a child with albinism who had been neglected at school. Unaware of where to take the case, they went to the ministry. “Today, our candidates get specialised papers with a large font which helps with visual impairment. With that, many can excel, something that was rare in the past owing to disabilities.”
There has also been a waiver, courtesy of Hon Kadaga, on sunscreen which was previously categorised as a cosmetic. “Inasmuch as there is still a journey to make because we have to write to the commissioner with every donation consignment that comes in, we are thankful for the strides made.”
Namutebi hates social injustices. If she can put a smile on one or two people, she believes her efforts would have paid off. “The smile that a mother gives me on receiving sunscreen for her child is priceless and pushes me to do more.”
The organisation believes that in the near future, they will build a skilling home to help people with Albinism work and be able to earn a living.
They also hope to have sunscreen produced within the country because currently they depend on donations that come in only once a year. “However, there will be great market for the product because for us, it is a basic need.”
Above all, they pray that people with albinism will live a dignified life and be able to engage in the different spheres of the economy. “We want to pick a leaf from Kenya where there are several people with albinism succeeding in various circles.”