Before I post this interview I have to explain you the importance of this particular piece. As some of you might know I was planning to travel to Nairobi, Kenya a year ago (back then I was awarded a reporting trip from European Centre for Journalism) but as I expected my trip ended in Cairo (as my flight was planned for 25th of January, even back then rather obvious time of unrest for Egypt). I have prepared for the trip and got in touch with all the key personalities I was about to interview, and Karijn was one of them. She was extremely friendly even back in 2011 and ultimately helped me through the harder times of my disappointment, stayed in touch and now in 2012 – using the opportunity of Global Voices Summit – we have finally met off-line. The NGO she is running in Kenya, Youth on the Move, supporting people suffering from epilepsy, does great work and I am really happy to be in touch with them. I am also really, really privileged that Karijn has found a day to come up to the capitol for a cup of capa (“medicine”) tea and over early dinner explained some of the highlights of their current work. (She has also told me a lot about the reality of life for locals and expats in Nairobi nowadays, some of which requires more insights and another post, I gather). And later, once I was back in the UK and had time to re-think everything I have learned in Nairobi, she still had time to respond to my questions!
Below you will find the interview I did with Karijn over e-mail, but I would like to point out that I was so moved by her passion and commitment that I have decided to contribute at least a little bit to their work and donate something their team needs at the moment – a flip cam, my old one. Maybe it’s old but I think it is in a good state to serve Kenyan youth on their journey – what a great way for a blogger to empower other voices. And if you want to join me, you can simply get in touch and offer your old flip cam too. I will be sending mine to Karijn parents in August so she can safely take it to Nairobi with her. All donated cameras will be featured on-line and you will see the work done with the help of those simple but amazing devices;)
Sylwia: Karijn, when we met in Nairobi this month you told me a lot about the event you have recently organised in Kenya – can you tell me more about it?
Karijn: There are two international organizations for persons with epilepsy: International League Against Epilepsy and the International Bureau for Epilepsy. They organize congresses on epilepsy internationally, to bring information about the latest developments in epilepsy care to the health providers. This year they organized the 1st African Epilepsy Congress in Nairobi. Our youth with epilepsy were requested to launch the congress with their performance. The minister of Medical Services was invited for the launch and gave his speech. He watched the youth perform and stated in his speech that more activities like ours need to take place to give them equal opportunities in society. For three days professionals gave presentations and workshops were held. It was an impressive event, as it brought the minds of people in epilepsy care in Africa together to develop ideas how to bridge the enormous treatment gap in epilepsy care (80% in Kenya, KEMRI-Kilifi, 2012)
Sylwia: How did the event affect the everyday work of your organisation?
Karijn: We were very active in helping to organize the event. The youths practised the dance for various days, and we assisted in mobilizing the media. It had a great impact; we were interviewed for various television stations and papers, which also helped to pass over the message on epilepsy to the community directly. The youths were also asked to help as hosts at the congress, so they were very much involved in the process. Our other activities still continued: our Movers Cyber was still running (to earn income for our awareness creation) and the clinics where the youth give coaching to the clients also continued operating. So it was a very busy time.
Sylwia: What are your personal learnings from this event?
Karijn: That we must unite with all stakeholders in epilepsy care to improve: Awareness, Access, Availability and Affordability of the epilepsy care to reduce the treatment gap.
The more we unite, the more we can achieve with the same means. They also agreed on what we always campaign for: the importance of awareness creation on epilepsy, as the epilepsy care offered by the government, is not of use as long as people do not acknowledge and accept the existence of epilepsy.
Sylwia: Do you feel that your organisation will benefit directly from a specific support of event attendees or more from the exposure the event provided to your work?
Karijn: The congress was both very good to inspire our colleagues with the information provided at the congress. The latest developments in epilepsy care were shared and gave new insights. Secondly, the congress helped us to get more attention from the media and maybe more important; from the international policymakers in epilepsy care. We could give our feedback on the international strategies and how we think it can be improved. We mentioned that we need more responsiveness to the needs and expectations of people with epilepsy in the community. Too often it’s doctors and policymakers deciding what has to be changed in epilepsy care, not knowing what the ideas of the people with epilepsy are. According to WHO’s Health Systems Report (2000), the health system has three objectives: 1. better health, 2. responsiveness to the needs and expectations of the patient 3. fair financial contribution. Objective two is often not enough paid attention to. Therefore I used my chance as a presenter to share with them the rights of people with epilepsy, to be involved in policy design (CRPD and the Kenyan Constitution). We hope that this will inspire the policymakers to invite people with epilepsy more often to be part of the process in the policy design.
People with epilepsy shouldn’t only meet with policymakers to listen and learn from them, they must be embraced as equal stakeholders in epilepsy care and their ideas must be taken seriously and implemented where achievable.
Sylwia: How do you use social media and the Internet to promote the work of your organisation?
Karijn: We use social media in various ways. The most active social media is Facebook. We have people from all over the world following our FB page Youth on the Move. People leave their comments and questions and people even send us mail to share their personal challenges and ask us personal advice how to live beyond epilepsy. Sometimes people from the US and other continents even say that their doctor failed to give them the information they needed to know how to overcome the challenges surrounding epilepsy. Doctors are often very busy and therefore may lack time to also guide their patients how to avoid triggers of seizures and how to live an active life. Through the social media we share the knowledge and experiences so that we bridge that gap that they experience when they go to the doctor. We also use social media to stimulate youth with epilepsy to develop their own opinion. We challenge them with statements and invite them to be part of the debates. The social media gives youth with epilepsy a face. They’re not anymore the patient alone. They are the people with wonderful personalities, inspiring ideas and experiences that they share online. They are connected with people with epilepsy or working in epilepsy care from all over the world. They assist in changing the mindset that epilepsy makes one disabled. They show that with epilepsy you can live a very active life. We post pictures of their activities, such as yoga, theatre, dance, music and picnic, and makes people enthusiastic to be part of the team. This year we even had guests from the US who found out about us through Facebook. They really wanted to meet with the youths and share experiences. It was an incredible event, not only the youths from Kenya feel empowered, but also our guests.
Sylwia: So what’s next for your organisation?
Karijn: Our hope is that we can give an international voice to more youths with epilepsy, especially the ones who live interior and who do not have access to internet. We are looking for opportunities to get flip cams so that we can easily give a voice to the youth with epilepsy through social media. Their voice is as important as the voice of the youth with epilepsy who have access to Internet, as the voice of the international policymakers. As mentioned earlier, youth with epilepsy have the right to be involved in policy development. As long as they are not invited as stakeholders in the policy design we need to remind the policymakers of their existence, and we need to bring their opinions and ideas to them. I think of policymakers of the Ministry of Youth, the Ministry of Health, but also the Ministry of Labor. What should these ministries do to make life for youth with epilepsy as bearable as for any other person? With the help of flip cams, we want to bring youth with epilepsy in contact with them. We want them to speak their mind in front of the camera, and share their opinion with the policymakers with the help of social media such as Facebook en Youtube. The challenge is that we cannot find flip cams, while they look amazing. It looks like a small cheap phone (which will not attract thieves) and can easily be taken to all places in Kenya to ask youth with epilepsy to share their opinion. We therefore hope that we can find people who could donate these to us. It would give a voice to the youth with epilepsy.
Sylwia: Do you happen to have video recordings or photos from the congress?
Karijn: Hi Sylwia, it would have been nice if we had our flip cam by then. We do not have shootings, except for a shooting made afterwards where Moses explains what he thought of the congress. Unfortunately, it’s a bit noisy on the background There’s also a video we made of our youths during the picnic. They’re dancing and singing their song Ahead Together. My colleague is changing the format and sends it to my mail. Once it’s done I will forward it to you.
Sylwia: This is all brilliant! Thank you for all your time!