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.
Having a disability means I see other people’s privilege. It’s not loud or aggressive. It sits in the background of everyday life, unnoticed by the people who benefit from it, have no idea they do it, and pretend they don’t when they do something wrong. It is often an invisible barrier.
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Tuesday morning I published a post about the difference between being a victim and being a survivor. I wrote about naming harm, refusing minimisation, and understanding the patterns that shape how disabled people are treated.
A few hours later, life handed me another real time example.
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Being a victim and being a survivor sound similar, yet the difference determines how people treat you, hear you, and decide whether your story is valid. This difference has come up in several conversations recently, from ordination discussions, the current CoE safeguarding audit, and general chats. This has caused me to reflect on what I name, why I name it, and how I understand the harm I have survived.
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I walked into Monday’s meeting with my DDO and ADDO prepared. I was calm and willing to shine a light, not fight, on the meeting with the Bishop, especially after meeting with Tim Goode.
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I have spent 30 years talking about disability, access, and inclusion but I realised that I have never written a post that answers, "What's the difference between equality and equity?"
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I silently celebrated thirty years since I was first diagnosed with a condition on Saturday.
It’s a strange milestone. It’s not a birthday or anniversary, but a reminder of a moment that changed my life. I was thirteen when a doctor told me I had Polymyositis, an autoimmune condition that didn’t fit my age, body, or story. Knowing what we know now, I can see why they said it, it partially explained why my muscles were weakening, I walked differently, and struggled. They told me I might not live past sixteen. At thirteen, I knew what that meant, but I didn’t understand it — not the way I do now.
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I’ve been a full‑time wheelchair user for six years. Before that, I walked with a stick, stubbornly and painfully, until the ground became a threat rather than a surface. It was a difficult decision. I reached a point where I couldn't avoid it any longer. I’ve written about that journey before: the grief of slowly losing mobility, the reluctant acceptance of using a chair, the fall that forced me to swallow my pride, and the reality of living with FSHD. Those posts explore the physical decline, emotional adjustments, and journey of independence that looks different than I imagined. Many in my position are forced to make that change. It’s not easy, but at some point it’s needed.
I’ve adjusted well. My powerchair is freedom. I travel everywhere. I love the independence, going by trains, and not worrying about falling. My chair is my body; my stability, safety, and autonomy.
However, there’s a part of being a wheelchair user that I never expected, and it’s worn me down: the jokes, especially the ones that aren't funny.
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Church Times published an article on a Church of England report today exploring the wellbeing of disabled and neurodivergent clergy. The opening line speaks of “encouraging steps” towards inclusion. The irony isn’t lost on me. Even the metaphor reveals how deeply ablest language is embedded in our culture.
Let alone terms in the article like “physical impairment” that reveal a worldview that frames disabled clergy as deviations, manageable problems, and assessable risks. The Church cannot claim progress while its structures, language, and processes remain shaped by ableism.
"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.
