Although I write openly about my health, I don’t track what I’m losing or what FSHD is doing. Every time I see my specialist he asks what’s changed, but I don’t give him the whole picture. I forget things and kick myself after. This post is a way of tracking it better.
I went to the dentist yesterday. The dentist herself is lovely and we often end up talking about faith while she works. She is warm, calm, and genuinely kind. I still hate going, though. I always have.
I reached a point recently where driving no longer feels like the right option. It's been coming for a while. I didn’t want to admit it at first, since driving has always been part of my independence. It's how I've gone to church, grown ministry, supported youth, attended ordination meetings and school visits, and everything else that fills my week. It was the way my long distance relationship lasted with Hannah, how I maintained access to the boys, and how we’ve gone on all our adventures over the years. It was freedom, routine, and normal. It’s not normal anymore.
Tomorrow we gather to honour my curate, Sue at her thanksgiving service. 175 people have signed up. Our church fits around 140 – 150, and more will likely arrive. The hall across the road is our overflow space, livestreaming the service for those unable to fit in the church. It will be a big day. It should be. She was an incredible presence.
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.
People often believe that if a space is accessible, it must be usable. These words sound similar, but they do not mean the same thing. Accessibility is the presence of something. Usability is the ability to use it safely, independently, and without barriers. The difference becomes clearer when you live with a disability and spend your life navigating the gap between the two.
Living with a progressive condition teaches you to recognise patterns, the shifts, changes, the way FSHD reshapes strength, posture, and movement. I have written about the years of falling, pain, feeling trapped in a body like this, the early arm weakness, the journey into mobility aids, the fear of using a chair too early, the misdiagnoses, the institutional barriers, and becoming a full time powerchair user. Despite all the years and the ever evolving health, my rare condition continues to surprise me as the FSHD world keeps progressing.
"The key to human flourishing is within Communities that flourish; at the heart of God in all of us. It is vital that the Church is equipped with the tools to respond effectively and with compassion.”
The Most Revd and Rt Hon Justin Welby, Archbishop of Canterbury
The realisation in my previous post on Ableism and of continued oppression within the timeframe of positive action hit hard.
