In many parts of Uganda, people with albinism face discrimination and violence just because they look different. However, Carol Flower, a renown media personality is one of the advocates leading the charge to assert the human rights of persons with albinism, change discriminatory attitudes and practices towards them, and fight for their community inclusion and participation.
Carol believes people with albinism in the country face a range of prejudices and social stigmas. She says they are often dismissed as belonging to another race, or as ghosts or spirits.
In an exclusive interview with UG Christian News, the NTV Uganda Gospel Explosion show host expressed desire in seeing Ugandans come together to deal way with all misconceptions on albinism.
Albinism is a rare, non-contagious, genetically inherited condition which occurs worldwide regardless of ethnicity or gender. People with this condition suffer from abnormal skin pigmentation resulting from a hereditary inability to produce melanin in their skin cells, causing vulnerability to sun exposure.
In the past decade, reports show there have been close to 700 attacks against persons with albinism in 28 countries across the region—and these are just the reported cases. Many cases go unreported due to the secrecy of this ruthless practice or the involvement of victims’ family, among other factors.
There are superstitions in some parts of the country that albino body parts bring wealth, power or sexual conquest, and that having sex with a person living with albinism cures HIV and AIDS. Attackers sell albino body parts to witch doctors for thousands of shillings, according to Amnesty International.
What is Carol Flower doing to change this fate? She speaks to UG Christian News.
You’re raising awareness to debunk albinism myths, what inspired you to take such an active role?
I came up with this idea in 2016 when I decided to use my platform as a TV personality to give back to society. Many of us are in the lime light, but why are we there?
Each year I have a theme and in 2016 I reached out to a lady behind the ‘Eseza Foundation.’ In this foundation they take care of people with different kind of tumours. And some of them have viruses in their bones. I try not to go for obvious cases, but seek out those that don’t have the attention they deserve or that are not heard of but need to be in the lime light.
This year, I am reaching out to people with Albinism. We intend to think that the only people with albinism facing hardships are those in Tanzania or Kenya, but that is not true. We have may facing various issues here in Uganda, its just that the cases have not been heard out.
I’m trying to be that voice. People with Albinism go through a lot of discrimination and are faced with a lot of diseases. Without the right treatment, up to 90% of albinos die before the age of 40. They die due to cancer. There are very few health services in Uganda to manage albinism, and many of those living with the condition cannot afford badly needed sunscreen and protective clothing.
Most of them come from poor families and hence their parents cannot afford to take them to school. Their body parts are harvested for ritual practises.
How do feel people with albinism are discriminated?
To me, I feel they are treated as though they are not humans. I believe they are people like us. In fact, I got to understand that when they go to hospital, some medics are scared of attending to them.
I believe individuals with albinism have come to fear people. They feel those with melanin (a dark pigment that is responsible for producing skin, hair and eye colouration) are a threat to them. I recently visited a family and the children were scared of me. They had never seen me, so they wondered; who is this and what why has she come to visit us?
Is there any visible link between the church and people living with albinism?
I’m not going to say that Church discriminates them. But what I want to say is that someone should not only stop at the pulpit. Church needs to reach out to people, and they shouldn’t reach out only to the well-to-do individual and communities. They should reach out to those that need the gospel – not just through the Word, but in all other means possible.
This could be financially, physically, emotionally. These people want to talk to someone. Many are hurting because they have failed to find someone in whom they can confine. They want a hug from someone, but they don’t have it because all we do is preach on the pulpit – ask for tithe and offertory – but don’t want to give back as a church.
How do we ensure the negative narratives around albinism are changed?
Persons with albinism do not need sympathy. They need acceptance. If they can be accepted in society as they are, that would be the best for them.
I was recently interviewing a young lady, she has been married for 3 good years, she was full of life at the start of the interview, then, towards the end, I asked her if she was married, she broke down. I had to asked her what she broke down, she responded and said every single day I am being mocked by my fellow women for getting married to someone they say is not like me, and they think I don’t deserve him. Honestly speaking, I had to stop the interview. I had to hug her. I felt her pain.
Just imagine if in her neighbourhood, no body was mocking her or making her feel less of a woman – wouldn’t she feel very happy?
If people living with albinism can be accepted and treated like anybody else, they wouldn’t have that low self esteem.
Is it worse to be born in town with albinism that in the village?
The city would be better for them. Most people in the city are literates and they somehow look at things differently. But in the villages, everything has got a myth to it. Why? Because they are not that educated or exposed.
Would you say officials are taking appreciable steps towards protecting people with albinism?
Many times they [people with albinism] go through a lot, and for some officials, its ok. Recently there was a case of a girl who was raped by three famers, she reported the case to police and all they said was the perpetrators needed to ‘test’ an albino.
Due to the traumatising experience she went through, she doesn’t want to see anyone. I have actually tried to reach to her, she doesn’t want anyone around. Some of them have committed suicide. No one is helping them legally. They need to be defended.
Personally I have been sponsored and taken care of. I know what it feels when you don’t have care. I have to give back, because someone gave for me to be well.
Tell us about the upcoming dinner through which you seek to raise support for people living with albinism?
The dinner will happen on 29th September, 2018 at Serena Hotel Kampala – Katonga hall. It will be aimed at fundraising for them a piece of land.
There is a young man called Peter Ogik who has an NGO called Source of the Nile Union of Persons with Albinism (SNUPA) that takes care of people with albinism in Jinja district. Unfortunately he is renting, and the office is so tiny. I believe he is doing a great job. He also takes care of children who have been abandoned by their families.
If I fund raise for hm to get a piece of land, I believe this will help them in very many areas of life. For example, if they start agricultural activities on this land, they will earn from it. If some other samaritan puts up a structure to enable them acquire vocational skills, they will be able to take care of themselves.
This year if we can get a piece of land, then I know next year we can fundraise to establish a structure for them.
Tickets are at Ush200,000 and a table is Ush2,500,000. All proceeds go to buying that land.
Complilation by Alecho Karen, Aaron Sseruyigo