Journalist Kristina Parkov har skrevet en fin artikel om min ugandiske rejse, der startede for efterhånden tre år siden, og det arbejde vi udfører hos BDI. Artiklen indeholder også interview med BDI’s stifter, Joel Mwesigwa. Artiklen er blevet til ved hjælp af crowdfunding på Peblish. Artiklen er oprindeligt på dansk, men jeg har fået tilladelse til at bringe en engelsk version her på bloggen. Oversættelse af den originale artikel er udført af mig og er endelig godkendt af Kristina. Find den danske artikel her – det kræver (gratis) login at læse artiklen på dansk.
Danish journalist Kristina Parkov has written an article about my Ugandan journey that started more than three years ago, and the work we do at BDI. The article also contains an interview with BDI’s founder Joel Mwesigwa. The article has been published through crowdfunding at Peblish, and is published on my blog with permission. Translation of the original article is made by me and has been accepted by the author.
Surely, white people can’t be deaf?
When Vickie Mølgaard-Madsen lost her hearing at the age of 20, she had a hard time identifying with other deaf people and did not want to learn sign language. But a voluntary stay at a school for deaf children in Uganda gave her a new perspective on her situation – and a whole new battle to fight.
By Kristina Parkov
This is not an article about saving people who are worse off then you. Rather, on the contrary. If you ask Vickie, she needs the deaf children she has met through her volunteer work in Uganda, more than they need her.
Vickie became deaf when she was 20 years old. A rare disease in the central nervous system was the cause of the deafness. Communication with the outside world used to be easy, but suddenly it became a mountain to climb.
Today Vickie is 35 years old. She has learned to cope with her deafness and communicates primarily through ”Exact Signed Danish” (in Danish it’s called “Sign Supported Communication” when translated directly – it is not the same as Sign Language). In some situations she needs an interpreter. She has had a hard time dealing with actual Sign Language. To this day, spoken Danish is her native language, and Danish Sign Language will always be a foreign language to her.
“I’ve learned to live with my loss”
Only after travelling to Uganda’s capital Kampala in February 2013 to work as a volunteer for the non-profit organization Boanerges Deaf Initiative (BDI), did Vickie find “her” sign language – the Ugandan Sign Language.
“I had just undergone two brain surgeries in four days, had leave from my studies and needed something new to happen in my life. Through my network I learned about BDI and I quickly decided to travel to Uganda.”
“It was love at first sight! If you look at the big picture, at first it was about my own identity. I am deaf and can never be hearing again. I’ve learned to live with it. But it has taken me many years. A small part of me will always be wishing I could still hear. Music, radio and uncomplicated conversation are among the things I miss the most. I don’t think this feeling of loss will ever go away, but I have learned to cope and live with it,” says Vickie.
Deaf people are seen as cursed – and evil
In addition to living with a disability that creates significant limitations, deaf people in Uganda are struggling with a variety of prejudices that result in a pronounced risk of social exclusion and isolation.
A common belief is that deaf people are cursed and evil – even children. Deaf children are seen as a source of shame in Ugandan families. Since there are no job opportunities for the deaf, poor families do not prioritize spending money on sending their deaf child to school.
Deaf people are called kasiru (Ugandan word for fool or stupid, ed.) and they are often victims of injustices such as domestic violence and rape. Exclusion from the local community, and even the family, is not unusual either.
The causes are both cultural and poverty-related. Poverty is a fact of life for many Ugandan families. It is considered a waste of time to send a deaf child to school when the job opportunities are close to nothing.
Vickie tells about the first time she met a deaf child and his family at his home in Uganda: “The first time I was visiting a boy from school at his home is still very clear in my memory. When I came home that day I just cried and cried and stayed awake all night. It was horrible. Today I’m still affected and very humbled when I go on a home visit, but I’ve taught myself to react actively instead of becoming paralyzed.”
Have you felt the prejudices associated with deaf people in Uganda yourself?
“Yes, indeed. In Uganda white people are commonly seen as something almost utopian. Many Ugandans see white people as perfect – and rich. And then there I was – I’m deaf! (And not rich either btw…) The reaction among the locals was like: “White people can’t be deaf?!” When I told them I was a university student, I was just met with even more astonishment: “Deaf people can’t go to university?!’”
The social problems affecting deaf people in Uganda arises from a mix of religion, superstition, culture, norms and poor economic circumstances. Vickie has felt the negative attitudes towards the deaf on her own skin:
“The worst situations are when people treat me disrespectful and ugly, simply because I’m deaf. Many times people have shouted ‘kasiru’ after me as well. It hurts – but mostly it hurts because I know it’s everyday life for most deaf people in Uganda.”
Human rights have dire straits
The Ugandan Government has attracted attention from the West for a highly controversial bill that – seen through Western eyes – is offensive to most basic human rights. It includes a controversial bill on death penalty for homosexuality. It was, however, not adopted.
Joel Mwesigwa Tonny (b. 1980) is the founder of Boanerges Deaf Initiative (BDI) and points out that the organization is based on a Christian outlook, but that he rejects the Christian fundamentalist mindset. The goal of BDI is not to proselytize Christianity. The focus is entirely on deaf children’s rights. Violations of human rights are part of everyday life in Uganda.
“I have seen several examples of violation of human rights in Uganda. Not only the rights of homosexuals, but also women and children. If I was gay and lived in Uganda, I surely would do everything I could to hide it. I would not want my mother to find out, because it would mean social isolation.”
Can you compare the situation of the deaf and the homosexuals in Uganda?
“Yes and no. Neither deaf nor gay can be open and stand by him or herself, as it can have violent consequences. On one hand you can say there is a similarity between the two groups. On the other hand, the reasons for locals to treat these two groups as outcasts are very different….”
Cheap malaria medicine causes deafness
Deafness is a widespread and growing problem in Uganda. The reason is poor access to medication and medical care. Diseases such as meningitis, which can cause deafness, is rarely treated in time – and many Ugandans who survive the disease have permanent injuries. Another reason is malaria, which is a common disease with a usually expensive treatment. In an impoverished population, people will always choose the cheapest available drugs.
“In Uganda, the cheapest available drug against malaria is called Quinine. It is a medication that has been made illegal in countries like Kenya because of its well-known side effect that unfortunately causes deafness. A poor family will always choose the cheapest solution – it gives you a chance to survive, but the consequences of the medicine can be fatal”, says Joel Mwesigwa.
A choice between dying of malaria or taking a medication that may result in deafness?
“You can say that there is certainly a risk that you end up deaf, if you take the medicine,” says Joel Mwesigwa.
Only 2 percent of Uganda’s deaf children go to school
BDI’s school for the deaf is one of the few in Uganda, where tuition is free. Just 2 percent of Uganda’s deaf children go to school. Without school and education the prospect of a future as a self-supporting individual is less likely.
For BDI the goal is to offer the opportunity of a brighter future to poor, socially marginalized deaf children. This will be done through vocational training in areas of carpentry, tailoring and shoemaking – these crafts are highly demanded in Uganda.
“The sad reality is that deaf children in Uganda are considered to be a curse and they become dehumanized. And if they are poor and can’t afford to pay for tuition at a private school, they are completely marginalized and isolated. They are paying a very high price for their disability,” says Joel Mwesigwa.
De-stigmatization must be carried out through religion
Another important goal for BDI is to de-stigmatize deaf people, so that they are able to obtain acceptance in the community. And according to Joel Mwesigwa, this is most effectively done through religion.
“I have accepted a theology I prefer to call ‘the theology of disability’. I am basing my work on the message that in God’s eyes there are no mistakes – it is He who created mankind: the deaf, the blind, the black and the white. I try to use that as my approach to the prevailing culture in Uganda. By using this theological approach, I’m trying to make Ugandans accept disabled people. I do this, because in Uganda talking about God is such a big part of everyday life”, says Joel Mwesigwa.
Family had deaf son chained to a tree
When the children arrive at the school for the deaf in Kampala, typically, they have no language – at most a few homemade signs. Their childhood is often characterized by loneliness, defeat, failure and violence.
Joel Mwesigwa’s brother, Joseph, became deaf after a period of illness. After this his family’s behavior towards him changed. He was left to himself and abandoned by his closest. When he was 20 years old, a local group set him on fire, and he was killed. The death of his brother Joseph motivated Joel Mwesigwa to become a deaf activist. Subsequently, he has handled many situations where deaf people’s rights have been violated.
One Ugandan family had not given their deaf child a name, yet even the family dog had a name. BDI’s founder has also taken action against a family who had a deaf son chained to a tree.
The police and relevant authorities are always contacted when he encounters families who violate the rights of the deaf.
Joel Mwesigwa blames the culture: “I will label many of these people ‘culturally disturbed’. They believe that deafness is the deaf person’s own fault and that he or she is cursed and stuff like that. There are so many abuses going on – to even the most fundamental human rights. The harsh truth is that only a very small part of the deaf people in Uganda live a decent and good life.”
A language is fundamental for thriving
For Vickie, the most important thing is to experience, that the children get a language. For without a language, they have nothing.
“Many people say, that I’m doing an important job and that BDI needs someone like me. But the truth is that I probably need BDI more than they need me. I live with a chronic disease that can have some very serious consequences. Uganda and the children of BDI do not let me fall into depression and a trap of self-pity. And no, it has nothing to do with the ‘the poor and hungry children in Africa who are worse off than me’. Not at all. I want them to grow up without being stigmatized because of their deafness. I want them to become strong, free and independent individuals with prospects and a bright future. Naïve? Maybe. But I believe in it.”
Copyright by Peblish.