"Observation is Not Participation: Why Children’s Voices Must Lead Change"
Article by Aisling Byrne, Voices for Change Ireland
Observation is Not Participation: Why Children’s Voices Must Lead Change
“As a late-diagnosed autistic woman, a parent of two autistic children with additional support needs, a Registered Intellectual Disability Nurse, and founder of Voices for Change Ireland and chair of D20 Autism Friendly Town Initiative, I have experienced disability services from many different perspectives. One message has become increasingly clear: disabled children and young people are too often spoken about rather than spoken with.
This is the inspiration behind my poster presentation, “Observation is Not Participation: Overcoming Structural Barriers to Children’s Voice in Disability Services through Community-Led Co-Design,” which has been selected for presentation at the EU Presidency High Level Conference: Listening to Children and Young People – Challenges in Challenging Settings, taking place in Dublin Castle on 30–31 July 2026.
The project explores how we can move beyond consultation and towards genuine participation. While there are strong policy and legal commitments to children’s rights, too many disabled children and young people still face barriers to having their views meaningfully included in decisions that affect their lives.
Guided by the principles of the Lundy Model of Participation, this project has been co-designed with disabled children and young people who have contributed in ways that work best for them. Through conversations, Zoom meetings, emails, artwork and written reflections, they are sharing their lived experiences, the barriers they encounter, and, most importantly, their ideas for change. There is no single “right” way to participate; meaningful participation means creating safe, accessible and flexible opportunities that meet each child where they are.
Alongside the poster, a collection of anonymous artwork and lived experiences will showcase not only the challenges children and young people face in education, healthcare and disability services, but also their creativity, resilience and practical solutions for improving systems.
My hope is that this project encourages policymakers, practitioners and communities to rethink what participation really means. Listening is only the first step. Children and young people should know that their voices matter, that they have been heard, and that their contributions have influenced decisions.
This work is not just about highlighting barriers, it is about demonstrating that when disabled children and young people are given genuine opportunities to participate, they become partners in designing better services for everyone.
I look forward to sharing this work in Dublin Castle and continuing the conversation about how we can ensure that observation is never mistaken for participation.”
Aisling Byrne, Voices for Change Ireland
Want to support our work?
📰 Sign up here to receive our free weekly newsletter every Wednesday
🌱 Donate here or become a paid subscriber to support our work.
☕ Buy us a Coffee here.
🤝 Become an Access Ally here.
The Disability Participation News Hub CLG is a disabled-led not for profit organisation.