Showing posts with label disabled. Show all posts
Showing posts with label disabled. Show all posts

Thursday, 30 July 2026

Why I'm Called to be a Priest

Since writing about the ordination process here, a few friends have been surprised that I felt called to be a priest. I thought it’s time to tell the story.

Tuesday, 28 July 2026

The Dentist Visit


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.

Saturday, 25 July 2026

Emotional Overwhelm

This week has been stressful. War and Order, the game I enjoy and play, became a second workplace. I’m the alliance leader. We’ve had a few personal dramas that match many real life communities. Personalities collided, tempers rose, and I found myself dealing with conflict from every direction over three weeks. I managed it at the start, yet, by the third week, the emotional cost built quietly. Arguments and defensiveness just kept hitting me. My normal conflict diplomacy wasn’t working. I reached the point where I knew I needed to step back, regulate, and delegate to my friends, but emotional overwhelm sat underneath it all.

Wednesday, 22 July 2026

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.

Sunday, 19 July 2026

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.

Thursday, 16 July 2026

When Driving Stops



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.

Friday, 10 July 2026

Privilege: The Invisible Barrier

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.

Wednesday, 8 July 2026

Disability and Relationships

A recent discussion thread in an online disability community has made me think about the relationship between disability and the people around me. 

Sunday, 28 June 2026

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.

Wednesday, 24 June 2026

Finally Understanding Myself: My ASD Assessment and Diagnosis

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.

Monday, 22 June 2026

World FSHD Day: The Day After


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.

Saturday, 20 June 2026

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.

Tuesday, 16 June 2026

Independence vs Autonomy

A closed vintage compass locked inside a small metal birdcage with a brass padlock, placed against a smooth rusty red background. The title “Independence vs Autonomy” appears clearly at the top in off‑white text. The image symbolises restricted freedom and autonomy constrained by imposed safety or control.

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?

Saturday, 13 June 2026

Struggling to Sleep


Night often means rest. It used to mean the end of the day, the quiet moment when everything slowed down, but that hasn’t been my story for the last twenty years.  

Wednesday, 10 June 2026

Living With Pain In A Body That Will Not Settle

Pain has been part of my life for thirty years. I thought I understood it. The aches felt sharp and heavy and I believed that was as bad as it could get. I was wrong. The more my FSHD progresses, the more pain changes. It’s now deeper, constant, and woven into every part of my body.

Thursday, 4 June 2026

A Positive School Meeting

A clean thumbnail image for the blog post A Positive School Meeting. It shows two hands shaking in agreement beneath a simple orange silhouette of a school building with a small flag on top. The background is light beige, and the title appears above in dark green text. The design symbolises collaboration and constructive communication between parent and school.

Two weeks ago I wrote about an incident with a staff member at Arty’s school. A week later, after my complaint, I met with the Head teacher. It wasn’t the best day. Miss L, offered to move the meeting but I wanted it done.

My nerves weren’t just about Arty or what happened that morning. After eighteen months of fighting for James, I knew school meetings can turn against you fast. I’ve watched schools hide mistakes rather than fix them. I’ve seen the system break my child. Those experiences entered this room with me.

This meeting felt different. They had a staff member take notes because I cannot. That alone was a small victory after everything that happened with James’ school.

Saturday, 30 May 2026

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.

Wednesday, 27 May 2026

When Your Core Gives Way

A curved silver metal bar bends gently downward against a light green textured background. Above it, the dark green title “When Your Core Gives Way” appears in a clean serif font, centred and clear.

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.

Saturday, 23 May 2026

Stepping Into Disability Communities

Teal background with white title text reading ‘Stepping Into Disability Communities.’ Below, two stylized wheelchair user icons face each other beneath a glowing white cross, symbolizing unity and faith.

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.

Thursday, 14 May 2026

When Survival Isn’t Abstract 

Minimalist yellow thumbnail with a white silhouette of a head in profile speaking. The speech bubble emerging from the mouth is crossed out with a red prohibition symbol, symbolising silenced communication. The title “Survival Isn’t Abstract” appears in bold navy text at the top.

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.