“Living with osteogenesis imperfecta means breaking bones often — but ‘Bone Deep’ is about what happens after. It’s about rebuilding, experimenting, and redefining strength on my own terms.”
Matt Shilcock, Producer of ‘Bone Deep’ documentary series
Bone Deep is a raw, personal documentary series by Matt Shilcock, exploring the intersection of lived experience, experimental therapies, and resilience in the face of osteogenesis imperfecta (OI). The series explores how people with disability can take the lead in their own medical care, using lived experience to inform treatment decisions and challenge traditional models of healthcare. This project is an example of inclusion-driven innovation, where storytelling becomes a powerful tool for self-advocacy and systems change.
Matt Shilcock has osteogenesis imperfecta (OI), a rare genetic condition that causes bones to break easily. In Bone Deep, he documents his own experiences with increased fractures and physical decline, and his journey to explore experimental treatments such as peptide therapy. Rather than accepting medical care as a one-way process delivered by professionals, Matt approaches his health as an active researcher, decision-maker, and advocate.
The documentary combines personal storytelling with scientific inquiry, modelling how people with disability can influence their own care and navigate complex health systems. It challenges the idea of the “passive patient” by showing what it looks like when lived expertise leads.
The series aims to influence how the medical profession engages with disability, and to support others in building their own confidence to self-advocate.
This project was funded by the JFM Fund because it demonstrates the value of disability-led innovation and the power of self-advocacy in health contexts. It shows how storytelling can influence attitudes, practices, and understanding within the medical system – particularly in relation to rare and chronic conditions.
The goals of the Bone Deep documentary series include:
The expected outcomes of the documentary series include:
“Living with osteogenesis imperfecta means breaking bones often — but ‘Bone Deep’ is about what happens after. It’s about rebuilding, experimenting, and redefining strength on my own terms.”
Matt Shilcock, Producer of ‘Bone Deep’ documentary series
