Over the last few months I’ve written about equality and equity, accessibility and usability, independence and autonomy, and survivors and victims. These are topics that people often confuse, yet the gap between them is where disabled people live. Those gaps are important. The difference needs to be discussed. This time, I wanted to discuss presence vs participation.
Anyone who has followed my mental health posts will know the journey hasn’t been simple. I’ve shared my breakdown in 2012, the years of rebuilding, the Dependent Personality Disorder diagnosis, the slow climb back to stability, and the long process of understanding who I am. I’ve also written about communication differences, sensory needs, routines, overwhelm, and the traits I recognised in Will and James long before I recognised them in myself. It all led to this moment.
World FSHD Day 2026 is over. Many people worldwide with FSHD, spread across countries, cultures, and communities came together for one cause. Not all 8,000, but enough to make me feel united. They shared their stories, photos, orange‑segment smiles, and honesty. I have loved it. I’m not alone.
