Epilepsy, or "The little dying" in Swahili; the challenge to make a 'boring' subject interesting
Karijn Aussems, 32, is director of the NGO Youth on the Move, an organisation in Kenya that works with people with epilepsy. She left The Netherlands and moved to Kenya in 2008 and in the process she has learned that epilepsy is often seen as a boring subject; both for potential sponsors, and for people in the streets.
“We are making it more interesting and we educate people. We start by listening to the personal stories, experience, behaviour and ideas and we use this in education.”
I met Karijn during the summer of 2006. She just received her Bachelor’s Degree in Community Development and was very much focused on moving to Kenya and start activities for Youth on the Move in Nairobi. The framework of the organisation and its aims were put in place, but the challenge of getting sponsorship remained. “Somehow epilepsy seems to be a boring subject, it doesn’t have the ‘sexy’ image like AIDS or empowerment of women. These subjects are given lots of attention and money. People in the Western world talk about these issues. When it comes to epilepsy this is not the case”.
When we met Karijn came across as if she was in a hurry. “I am trying to catch up time”, she says. Karijn knows what it feels like to have epilepsy; she lived with it for 22 years. It restricted her life in many ways. After a successful operation some years ago, she now lives a life without limitations due to epilepsy and is more self confident than ever before. However she clearly remembers the way she was bullied in primary school, the way she was not able to rely on her body and the uncertainty about being ‘different’. It was her personal history that motivated Karijn to start Youth on the Move. The choice to work in Kenya was made when, working as an intern, she found out that in Kenya there is hardly any information available that helps to understand what epilepsy is, what it means and how you can live with it
Meeting Karijn again in June 2009, during a short visit in Utrecht, it shows that she has more peace of mind. After the ‘post election violence’ in 2008 Karijn has moved to Kenya and since then Youth on the Move has been up and running. At the time, with no sponsors willing to support, she decided to move to Kenya anyway and start Youth on the Move independently. Fortunately she got unexpected financial assistance from a pharmaceutical company.
Youth on the Move wants to create awareness about epilepsy in a society where there is still a lot of ignorance towards people with epilepsy. In its activities as well as in its lobby the organisation aims at contributing to a society where people with epilepsy are able to participate equally. With the necessary personal guidance they can develop skills to participate without shame of seizures or other people’s reactions.
Today one of the activities of Youth on the Move is educating youth about epilepsy on a weekly basis. Everybody is welcome to join the group; both youth with epilepsy as well as people who are interested or involved in other ways. “The diversity of the group brings an extra value, it provides different perspectives in discussions. A teenager with epilepsy has a different story than a mother who has a child with epilepsy, or a neighbour who wants to understand what happens during a seizure”.
The main condition for exchanging experiences is safety to share feelings and thoughts within this group. According to Karijn the strength and the success lies in the way participating youth are encouraged to share experiences, knowledge and stories and this marks the beginning of the learning process. “I will not lecture them about what is right or wrong. It is all about their questions, and problems they are facing in daily life. Together we try to enhance self esteem, social skills and find solutions. To achieve this it is essential to relate to other people’s personal experiences”. Individual experiences make the subject of epilepsy more personal and real, also to other stakeholders and potential donors. Experience shows that a lot can be gained with little support, activities and interventions. This way more awareness on the subject is raised, and it loses its image of tediousness.
Youth on the Move also has a one year training programme for twelve young people with epilepsy per year to become youth community workers. Part of their training is focused on how to use their own experiences constructively during their day to day work. It is Karijn’s conviction that education has to go hand in hand with participation. The quote by Confucius on the organisation’s website ‘Tell me and I will forget, Show me and I may remember, Involve me and I will understand’, clearly illustrates the underlying ideology of Youth on the Move.
The organization lobbies with international bodies such as UNICEF and the Kenyan National Committee for Human Rights to forward the rights of people with epilepsy.
“We also collaborate with the Kenyan national Government. I believe that, as an organisation, we have to work together closely to be able to realise long term goals”, she states firmly.
While in the Netherlands for some weeks, Karijn strengthened the relations with her sponsors for the coming year. Within two years she hopes to have accomplished that people in 50 different towns and cities in Kenya are educated about epilepsy. With their specially educated community workers Youth on the Move wants to join regular health care education programmes. Full of energy and ideas she is ready to return to Kenya and get back to work as soon as possible.