It all started in primary school in the Netherlands. I sat in the middle of the class and got one of my epilepsy seizures. As I slowly regained consciousness, I heard some dripping on the floor. I looked down and I awkwardly noticed that I urinated during my seizure and that the whole class was silently staring at me. My teacher Jannie said: “let me call your mom, you better go home”. I could have stayed at school and furthered my assignment after changing my clothes. Of course I’d be less productive for the rest of the day, with my reduced concentration, but I’d still be included. It was my teacher who didn’t know how to guide me to live an active life like my fellow pupils.
And then, twenty years later, seizure free thanks to a brain surgery, I had come to Kenya for internship to practice my skills as a youth worker. Coincidentally I had the privilege to meet Mercy in Kitui. The headteacher instructed Mercy to stay away from school because of her epilepsy seizures. Even in her church they told her to stay away, in her absence they’d pray for her healing. However, the prayers hadn’t had any results. She kept on having fits. I found out about KAWE, an organization offering epilepsy care, and went to their offices where I met an incredible team of professionals. They allowed me to meet with youth with epilepsy at their clinics. My encounter with them made it crystal clear that a lot was urgently waiting to be done, especially the personal empowerment. Although my self-esteem was still a bit shaky, my interaction with the youth with epilepsy instilled an unbreakable drive to unite efforts to push for a positive change in their lives.
Several months of hard work, brainstorming sessions, sleepless nights, and lobbying to convince people of the need to start YotM brought us in this New Life Church Building in Nairobi West. Today, ten years later, we celebrate the results of all the efforts with the Movers, the Kenyan Government, the schools, not to forget our sponsors and our unstoppable former and current staff. Why all this hard work for and by youth with epilepsy in Kenya? If you know how it feels to have a seizure, and once you hear of the small number of people with epilepsy making use of conventional treatment, then there’s nothing to question, then it is something you feel obliged to do.
Arnold Mindell suggests that we need a deeply democratic society for organizations, communities, and nations to succeed today and survive tomorrow. For that, he encourages us to have everyone and every feeling to be represented. But there’s a challenge again. How can you make sure that people with epilepsy can express their thoughts and feelings to have influence in decision making if they still experience seizures? The French philosopher Michel de Montaigne wrote in the 16th century about the limited power of our thoughts. How would these splendid thoughts of our soul be of help while we’re having an epilepsy seizure? To be precise, he wrote, ‘imagine Plato struck down by epilepsy or apoplexy; then challenge him to get any help from all those noble and splendid faculties of his soul.’
The political theorist Joan Tronto is of the opinion that we need to aim for a caring democracy. In a caring democracy, she states, societies reorient their values away from support for the “market” to support for the means for people to live human lives. And for that, she says, we need to make sure that youth with epilepsy have the physical ability to participate in decision making. Because how will the youth with epilepsy be able to attend Youth on the Move’s trainings if they are hindered due to the seizures?
Mindell, Tronto and Montaigne say something fundamental: we must make sure that people with epilepsy can participate in discussions and decision making. For that they firstly need access to care for them to be able to express themselves and for them to be in a position to equally participate in the community. The responsibility lies in the hands of the Government, corporates like pharmaceutical companies, the family, the neighbours, the teachers, and of course the people with epilepsy themselves. Youth on the Move has taken up the duty to strengthen the partnership between them. Together they improve access to care and their opportunities to be serious members of society that have equal opportunities to live human lives in dignity.
Mindell’s Deep Democracy and Tronto’s Caring Democracy makes us realise that we need to be sensitive for people’s thoughts and feelings and we need to take them very seriously. And that’s what Youth on the Move aims for. The Movers call their training room the Movers Paradise, the place where they can take off their masks, indeed share both their thoughts and feelings to get to know one another at a deeper level. They become who they truly are and utilise their talents to overcome the challenges in their life. They are the people with a voice that deserves attention and influence in decision making.
We kicked off YotM to contribute in ending the dependency they encountered because of their seizures. We wanted them to become independent Movers who can stand on their own feet. During this first decade we learned that this is impossible. The wellbeing of each person depends on the attitudes of the people in their environment. We all need one another to live in dignity. The youth fortunately have developed skills to feel free to express their needs for moral and medical support, and to give a lot in return, their talents to even be of support to others. I look at them with amazement, they taught me a lot and keep on teaching me and others the very basic life skills that we are all in need of.