Fearfully and Wonderfully Made Report: What you need to know

The Church of England released the Fearfully and Wonderfully Made report in February this year, but I know many have still not read it, even though it’s one of the most important pieces of research on disabled and neurodivergent clergy the Church has ever commissioned. It shapes how I live as a disabled Christian with FSHD and autism, my children and disabled friends lives, my calling and ministry, and how I navigate the ordination process.

I’ve mentioned it many times here but I realised I’ve never actually broken it down or explained it in a way that helps people understand what it says, why it matters, and how it affects real lives for those who haven’t read the seventy‑three page document. This post is my attempt to do that. A guide for anyone who wants to understand disability wellbeing in the Church of England.

Neurodiversity and the Church: Archbishop Sarah Mullally's Synod Statement

This week Archbishop Sarah Mullally shared that neurodiversity is a gift, not a problem to be solved, while speaking at Synod about the need for neurodivergent-led training, structural change, and a network of Neurodiversity Champions across every diocese. She spoke openly about her dyslexia, the assumptions made about her, and the way she learned to see herself as intentionally made by God. Reading this felt like a blessing that landed at a time when I’m still processing my own ASD diagnosis, the battles it took to get it, and everything it has reframed, especially as I received my ASD assessment report the same day this article was published.

When Honour Meets Barriers

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.

Presence vs Participation

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.

World FSHD Day: A 2026 Reflection

World FSHD Day has arrived again. Despite posting on Facebook each year, I last wrote about it here in 2018, and looking back now is like opening a time capsule. I knew my condition and feared the future but didn’t understand it yet. I walked, even when it was difficult, constantly fell, experienced pain and vulnerability, and felt trapped in my body. 

My FSHD is different now. I no longer walk. I still fall, but it’s progressed to my core. The pain, vulnerability and trapped feeling have deepened in ways I never imagined. Everything I was worried about has now occurred and I've been living with it for several years. That’s the nature of FSHD. It’s not just degeneration, but progression.

Independence vs Autonomy

Since college matured my writing, I’ve been revamping old blog posts, but it’s been hard seeing how my disability degeneration has stripped my independence.

Independence is important, but not as much as autonomy. Many able‑bodied people treat independence as the goal for disabled people and often misunderstand it in disability conversations. Autonomy, as control, choice, dignity, and the right to shape your own life, should be the real goal. 

What do disabled people mean by autonomy?

Accessibility vs Usability

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.

Stepping Into Disability Communities

I have spent most of my life disabled. Thirty years of muscle loss, pain, fatigue, and the slow shift of what my body can and can’t do. Thirty years of adapting, slowly deteriorating, and surviving. A life my children have grown up around. Yet I’m not part of any disability community outside the one we've built at church. Not properly.

I have changed that recently. My faith, knowledge, ministry, and life have grown. I am halfway through the ordination process. I’m shaping my calling and building a disability ministry. I have learnt more about disability theology, disability law, the Equality Act, SEN law, the difference between equality and equity, and the lived experience of disabled adults and children. I have been advocating for years, writing openly, and supporting others, but something shifted. I needed to go deeper and belong somewhere that understood my world.

When Survival Isn’t Abstract

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. 

Survivor, Not Victim

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.

Ordination: Where Things Are Now

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.

Equality vs Equity

 

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?"

Thirty Years: A Health Journey

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.

Ableism: Jokes that aren't Funny

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.

“Encouraging Steps” — The Ableism We Still Don’t Name

 

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.

No longer Complicit in Ableism

 

There's many things that disabled people become resigned to. We live in a world designed by and for non disabled.

In 2020 the world watched George Floyd take his last struggling breath in what clearly was a racially systemic action. Whilst we lived, we watched the reality of a negative continued action; this time it sent a ripple of "No more" across the world.

What can only be seen as a revival against oppression George Floyd's death, discrimination and the #BlackLivesMatter movement affected millions of people worldwide. Visibly and emotionally impacting a generation to the core.

As a white man, I will never fully understand what being faced with racism is like. Yet, I will listen fully to those affected by it.

It is for that very reason that I write. I need to speak up with how I'm affected by ableism around me.

Tackling Structural Ableism in Church

Accessibility is one thing that HAS made movement in the Rights for disabled people but not necessarily in the way you would think.

#BecauseOfAbleism

Amongst all of the equality posts, media and protests at the moment #becauseofableism ended up trending on Twitter this week.

In some ways it made me happy. I saw many tweets talking about ableism and within in them I could relate. I could read those comments and nod my head, click like and know that people would understand the battle that lives inside a disabled person’s world.

Then it made me sad.