A small but determined group in the Netherlands is going that extra mile to help address challenges that make a huge difference to the lives of people with cerebral palsy (CP) and their families. That organisation is BOSK.
With a wealth of lived experience, BOSK’s goal is to unlock knowledge and answer questions for the nearly 60,000 people with disability in the Netherlands, who often struggle with this alone.
BOSK is all about supporting and encouraging people to get the most out of life. Their projects tackle issues such as sexuality, children being able to make sense of their disability, and empathetic information upon diagnosis for families.
BOSK Director Martijn Klem, who has a child with CP, and Governance Coordinator Johannes Verheijden have an incredibly close connection to the difficulties people with CP face.
They believe that the BOSK website is the place where people with CP, and parents of a child with CP, share knowledge and experience, and together increase their strength and capabilities.
Tackling big issues
One of BOSK’s key projects aims to answer questions adults raised about their sexuality, and to help professionals broach the subject with them.
“Research shows that 90 per cent of all professionals think it is important to talk about sexuality with adults with CP, but only 5 per cent actually do it. Yet adults with CP have many questions, which they find hard to raise or find answers to. This project addressed both challenges”, Johannes said.
“Firstly we found out what questions adults with CP have regarding this subject. We organised a focus group discussion, conducted one on one interviews and did an open call for people to send in any questions they might have. Within three weeks we received over a hundred questions that needed answering.”
“We then interviewed experiential experts, sexologists, a rehabilitation physician, physiotherapists, sexual service providers, occupational therapists, social workers and a general practitioner. We taped the interviews, which formed the basis of a book that we published”, he said.
Funded by private funds, the book also evolved into a training module for professionals which helps them learn to talk about sexuality with their clients.
Helping children understand their disability
BOSK also created a book for children with CP to help them gain a better understanding of CP and explain their disability to others.
“Children with CP often have no clear idea of what kind of impact their condition has on them. By educating these children, and allowing them to educate others, we create a better and a deeper understanding how CP affects their life and what solutions they come up with to address the challenges they face”, Martijn said.
Together with author and remedial educationalist, Leen de Coensel, BOSK brainstormed about how to create information for children that they will actually use – something that was fun to do, would involve others, would challenge them to think about what CP means to them and would allow them to tell others what CP is and the impact it has on their lives.
The author came back with a concept of a ‘do-book’, in which children are guided by three characters who give information, challenge the child to think for themselves and to verbalise or make clear in a creative way what they feel and think.
“Children absolutely love it! It gives them a way to express their condition and the way they perceive CP. Parents and professionals are often surprised what ideas, answers, creative solutions and feelings the child has. Children with CP often use it for discussions at school. It lowers barriers and opens up conversations”, Martijn said.
Ageing with disabilities
They also conducted substantial research on the challenges that adults with a physical disability encounter, and turned it into a book about ageing with a physical disability.
“Together with Senior Researcher and experiential expert Sander Hilberink we interviewed adults with a variety of physical disabilities and sent out a questionnaire to adults with a physical disability through different patient organisations”, Martijn said.
“We did extensive research and created a website with an online forum, also writing articles in magazines for professionals and holding a national symposium,” he said.
The book covers subjects such as ‘Ageing, what am I up against?’, ‘How to prepare myself for ageing?’, ‘How to keep my body healthy and fit?’, ‘Dealing with fatigue and pain’, ‘Medication’, ‘Nutrition’, ‘Resilience’, ‘Active Citizenship’, ‘Support’, and ‘Taking care of yourself’.
The future is looking bright for BOSK, as they continue identifying and addressing the needs and challenges of people with physical disabilities.