Inside Martyn's Thoughts

Bible Study: Made in the Image of God — Part 3: The Image of God and the Life of the Church

2026-08-15T01:30:00.000+01:00

After exploring how the Image of God has been distorted, and reclaiming what Scripture actually says, we can finally ask what this means for the life of the church. If every person bears God’s image fully, how should the church look, feel, and function?

Scripture gives us a picture of a community where disabled and neurodivergent people are not simply included but vital to the church’s life.

Moses had a speech impediment, but when Exodus 4:11 shows he resists his calling, God responds: “Who makes them deaf or mute? Who gives people sight or makes them blind? Is it not I, the Lord?”

This is not judgement, a curse, or a defect. It’s creation. God doesn’t apologise for Moses’ body. God doesn’t offer a cure. God names disability as part of the diversity of human creation. This is one of the earliest biblical statements that disabled embodiment belongs within God’s creative intent.

Scripture shows that disabled embodiment is woven through the lives of God’s people.

Jacob walks with a limp after encountering God (Gen. 32:31).

Zechariah — temporary muteness (Luke 1:20–22). His inability to speak becomes part of God’s revelation.

Paul experiences temporary blindness during his calling (Acts 9), and later ministers through a chronic condition (Gal. 4:13–15). His embodied life becomes part of how God reveals and works through him.

These lives show that disabled people do not stand outside God’s image.

Their bodies and minds become places where God’s creativity, calling, and presence are revealed. Across Scripture, disability is not a barrier to calling. It becomes part of the story God tells through a person’s life. These aren’t exceptions. They’re patterns.

If God forms disabled people intentionally, then the church must receive disabled people intentionally, recognising them as expressions of God’s image.

When Jesus meets the man born blind, in John 9:1-3, the disciples ask the ancient question: “Who sinned?” Jesus refuses the premise. “Neither this man nor his parents sinned… this happened so that the works of God might be revealed.”

Before any healing occurs, Jesus teaches: Disability is not punishment, failure, or divine displeasure, but a place where God’s work is revealed.

In church life, this means disabled people are not waiting to be “fixed” before they can contribute. Their gifts, perspectives, and presence already reveal God’s creativity and grace.

As Archbishop Sarah Mullally recently reminded Synod, neurodiversity is a gift. John 9 shows us Scripture has been saying this all along. I don’t want to undermine hese brilliant words from the Archbishop, but it shouldn't stop at neurodiversity, all disability needs to be seen as a gift.

While 1 Corinthians 12:12–27 has been used negatively, Paul uses the human body as a metaphor for the church.

In his culture, bodies were described with hierarchy: strong/weak, honourable/less honourable, presentable/unpresentable. Disability theology rejects that hierarchy. So must we.

Genesis 1, Exodus 4, and John 9 have already told us: God doesn’t divide people into stronger and weaker, rank bodies, or assign worth by ability. The terms “weaker” or “less honourable” are not descriptions of disabled people. Paul’s actual point is this:

- every part is indispensable

- every member is necessary

- every gift matters

- no one can say, “I don’t need you”

Each person brings gifts the others do not have. Someone blind may have extraordinary spatial or sensory awareness. Someone deaf may have exceptional visual intelligence. Someone neurodiverse may see patterns or an ideas others miss. A wheelchair user may bring physical insight, resilience, or pastoral wisdom.

These are not “weaker parts” but unique gifts. The church is not complete without them. Disabled people aren’t on the edges of the church.

They are at the centre of its life, shaping its imagination, widening its welcome, and teaching the community how to love.

Paul continues this theme in Romans 12:4-8: “We have different gifts, according to the grace given to each of us.” Grace, not ability. Calling, not productivity. Gift, not achievement.

Disabled people’s gifts are not “bonus extras” or “optional contributions.”

They are part of the church’s essential ministry. When the church treats disabled people as optional, it contradicts Paul’s teaching. The body of Christ is designed to need every member. Disabled people don’t fill gaps — they shape the church’s identity, theology, and imagination. Without their gifts, the church becomes a body missing essential parts.

Some gifts come through speech, presence, wisdom, lived experience, patience, resilience, creativity, humour, or perspective.

The church shouldn’t overlooks these gifts. It’s enriched when it receives the fullness of God’s image in those with disabilities.

We see this when Jesus describes the kingdom as a banquet in Luke 14:12-14. Here, the people usually left out — the poor, the blind, the disabled — are not guests of pity but honoured guests who bear God’s image.

This is about belonging. Jesus teaches that a faithful community is one where disabled people are welcomed, valued, centred, honoured, expected, and celebrated.

This is not modern inclusion. It’s ancient hospitality and kingdom life for all those made in God’s image.

So what does an Image‑of‑God‑shaped church look like?

Its a community where:

- disabled people’s presence is received as revelation

- neurodivergent people’s ways of thinking are treated as gifts

- accessibility is not an add‑on but a way of honouring God’s image

- leadership is shared, flexible, and shaped by diverse bodies and minds

- worship makes space for different sensory, cognitive, and physical needs

- belonging is not conditional on ability, productivity, or conformity

- the pace of church life is shaped by the whole body, not just the fastest or deemed “most honourable” parts

- pastoral care listens to disabled people’s wisdom, not assumptions

- vocation is discerned in and through disabled embodiment

- the community expects God to speak through disabled people.

This is not extra work or accommodation. This is theology, Scripture, and the Image of God lived out in community, a church.

This is hopeful. The church already has what it needs: Each other.

Discussion (5 minutes)

1. What parts of church life look different when disabled people are seen as indispensable?

2. How does the Image of God reshape the way we think about leadership and belonging?

When disabled and neurodivergent people are recognised as indispensable bearers of God’s image, the church’s imagination begins to change, leadership becomes shared, belonging becomes mutual, accessibility becomes worship, and the community learns to expect God to speak through every member. This is not extra work — it is the Image of God lived out in the life of the church.

If you would like to read about the workshop I ran regarding this series, please click here. If you would like to see Part 1 and Part 2, please click these links.

Bible Study: Made in the Image of God — Part 2: What Scripture Says About the Image of God

2026-08-14T01:30:00.000+01:00

After naming the distortions that have shaped how disabled and neurodivergent people are seen in the church in Part 1 of this study, we can turn to what Scripture actually says about the Image of God — and the picture is far more expansive, embodied, and hopeful than many of us were taught.

The Image of God is the foundational identity of every human being. Scripture begins with that truth through creation, formation, calling, and purpose. It begins with a God who creates freely and intentionally. Church Doctrine discusses creation from nothing. God doesn't work with pre-existing flawed material. God is good and His goodness is in all life. If God is good. Nothing created is bad. Disabled bodies, bearing God's image, must therefore be good.

This means the Image of God isn’t an achievement or a reward. It’s not something you earn by fitting a cultural ideal. It’s a gift rooted in God’s own character. If God’s goodness is the foundation of creation, then disabled embodiment isn’t outside that goodness — it participates in it. Scripture starts the story here, with identity before ability, dignity before function.

Genesis 1:26–27 opens with a shocking declaration for its original audience: “Let us make humankind in our image.” Not kings or elite people. All Humankind. Every person, body, and life.

Genesis breaks Ancient Near Eastern culture expectations and places dignity in ordinary people and bodies. No human being is outside God’s likeness.

This means the image of God is a status you receive. You cannot lose it or damage it. Disabled and Neurodivergent people bear God’s image. The image is tied to God’s intention and creativity, not ability.

Genesis begins the story by saying: this is who you are. Not what you can do, but because of who God is.

Psalm 139:13–16 brings this truth into the body. “You knit me together in my mother’s womb.” The language is intimate, tactile, embodied.

God’s not distant from human formation, but present in it. Every body is crafted with care and intention.

This passage often celebrates typical development. It’s truth is wider. If God forms every person, then disabled bodies are not deviations. They are diverse expressions of God’s creative work. They’re not mistakes or problems to be solved. They express God’s creativity.

For neurodivergent people and those, like me, with genetic conditions, this passage says your life, being, and world is not outside God’s knowledge or care. You are formed, known, and held.

Psalm 139 refuses to separate God’s presence from the body. It tells us that embodiment — in all its forms — is the place where God chooses to be involved. That means disabled and neurodivergent bodies aren’t obstacles to God’s image. They’re locations of God’s creative attention and are ready to be met and revealed.

Isaiah 44:2; 49:1,5 adds another dimension: “Thus says the Lord who made and formed you in the womb.” “The Lord called me before I was born.” These passages root identity not only in creation but in vocation. God forms, calls, knows and sends.

Disabled people are not passive recipients of care. They are called, commissioned, and part of God’s mission. Their presence is purposeful. Their gifts are essential. Their lives testify to God’s creative intent.

Isaiah refuses to separate embodiment from calling. Calling isn’t something that happens apart from the body — it happens through the body. Isaiah shows us that vocation is embodied. God doesn’t call a theoretical version of you or those around you, including those with disabilities. God calls you as you are, in the life you have, with the body and mind you inhabit.

Ephesians 2:10 gives us one of the New Testament's strongest statements: “We are God’s workmanship.” The Greek word poiēma means poem, artistry, crafted work. Every person is God’s creative expression.

This dismantles the idea that worth is tied to productivity. Disabled people don’t need to “prove or overcome” to serve God. They’re already God’s workmanship.

Calling is not ability-based. It’s God-based.

When disabled or neurodivergent people are told they are lesser or treated as objects of ministry rather than ministers, Scripture contradicts both, insisting on their full dignity, calling, and participation in the life of God’s people.

The Image of God isn’t an ideal divine body but a diverse gift given to every person; and if every person bears that image fully, then every person must be honoured fully — reshaping how we see each other, the church, and ourselves.

Creations diversity is part of creation’s goodness. Thomas Aquinas compared creation to white light. A source that combines many colours— each distinct and necessary to creations function. Human diversity works the same way. Disabled bodies and minds are part of humanity's spectrum, reflecting God’s creative imagination and image. If creation itself reflects. Diversity isn’t a challenge to unity — it’s the way unity becomes visible. The church reflects God’s image not by sameness, but by interdependence.

The Trinity gives us a model of inclusion. Father, Son, and Spirit, all different, united, interdependence, mutually life-giving. Human life reflects God's image when it's shared, supported and connected.

Together, Scripture gives a clear theological picture:

1. The Image of God is universal and intentionally embodied.

Every person bears God’s likeness equally, and every body is formed with care.

2. Calling is embodied and shared by all.

Disabled people are called in and through their embodiment.

3. Worth and diversity are divine gifts.

Dignity rests in God’s workmanship, not human achievement. Human bodily and mental variety reflects God’s creative imagination, enriches the church, and diversity within his personhood.

This is the centre of the Image of God. It’s not fragile, conditional, or dependent on strength, independence, or conformity. It’s rooted in God’s creative act, relational nature, and vocational calling.

Discussion (5 minutes)

Let’s take a few minutes together to explore two questions:

1. What changes when we see disabled and neurodivergent people as full bearers of God’s image?

2. How does this reshape the way we understand calling and ministry in the church?

When we see disabled and neurodivergent people as full bearers of God’s image, the church’s imagination begins to shift. Calling becomes embodied rather than ability‑based. Ministry becomes shared rather than hierarchical. And diversity becomes a reflection of God’s own life rather than a problem to be solved. This is the heart of the Image of God — a gift given to every person, in every body, without condition.

You can read about the workshop I spoke at please click here. If you want to read Part 1, or Part 3, please click these links.

Bible Study: Made in the Image of God — Part 1: Distortions

2026-08-13T01:30:00.000+01:00

For years, disabled and neurodivergent people have been told—directly or indirectly—that their bodies sit uneasily within the doctrine of the Image of God. At a recent disability conference, I explored why these distortions persist, and why Scripture itself tells a very different story. Below is the first movement of that study.

I'm Martyn. A perpetual theological student, specialising in disability theology, a powerchair user, and neurodivergent. Today we're exploring being made in the image of God.

We will explore what Scripture teaches about the Image of God, but we need to name the ways this doctrine has been distorted. These distortions shape how many Christians read the Bible, and they affect disabled and neurodivergent people deeply. While this has happened throughout history, these distortions still impact lives today. So we begin by clearing away what the Image of God does not mean.

In the Ancient Near Eastern world, only kings were called this, as they, with their statues, embodied divine presence and guidance. Scripture, like Genesis, breaks that pattern, declaring every human bears God’s image. No power, class, or body hierarchy.

As divine bearers, our embodied reflects God’s creative intention.

Disabled people, however, for millennia have been treated as the exceptions, disruptions, and spiritual and physical defects. The problem isn’t Scripture itself, but how it’s been read, preached, and weaponised.

Leviticus 21:17–23 has caused damage. Priests with “blemishes and defects”—blindness, lameness, limb differences—are barred from altar service. This distorts Disabled bodies are unfit for God.

Leviticus operates within an ancient purity system. The altar symbolised ritual purity and perfection, not human worth.

There’s something even more damaging here. Leviticus also says that defective animal offerings displease God. Over time, interpreters blurred the line between those animals and disabled people. If a blemished animal was unfit for the altar, then a blemished priest must also be unfit for God. Disabled bodies were treated like defective sacrifices instead of human beings made in God’s image. The focus shifted from the person to the defect.

For centuries, that distinction has been ignored, and disabled people have been told—explicitly or implicitly—their bodies were less holy or welcome.

Deuteronomy 28:28–29, "the Lord will strike you with madness, blindness, and confusion of mind," presents disability as a covenant curse and the consequences of Israel’s collective disobedience.

Across history, "mental disorientation" and similar language was wrongly applied to neurodivergent people. No longer are we gifted images of God. Instead, this has turned into a theology where disabilities and neurodivergence are results of divine judgement.

Instead of being seen as image‑bearers, they were treated as warnings. That distortion still lingers today in the way people talk about anxiety, depression, psychosis, autism, ADHD — as if these are spiritual failures rather than human realities.

Once these distortions take root, they don’t stay in one passage. They spread. They shape how people read everything else. We actually see this distortion alive in the New Testament. In John 9, the disciples look at a blind man and ask Jesus whether he was cursed or whether his parents sinned. That’s Deuteronomy‑style thinking — absorbed into culture, repeated for generations, over 300 – 400 years, and treated as normal theology. If a belief can spread that far in just a few centuries, imagine how deeply it can embed itself over two thousand years.

Today, Disability scholars agree, this text is using disability as a metaphor for disorientation and shouldn’t be flattened into literal diagnosis, where disabled people carry shame that Scripture or God never asked them to.

More of these distortions carried into the New Testament and Christian interpretation.

2 Corinthians 12:7–10 discusses Paul’s “thorn in the flesh," which has been used to imply disabilities are spiritually weak or a lesson for others. Paul’s point is that God’s grace is sufficient and present in human weakness.

Instead of this becoming a source of comfort, disabled people have heard, “Your weakness is the problem God is trying to fix.”

This pattern continues when we reach 1 Corinthians 12. Paul’s metaphor was meant to show that every member is indispensable, but across Christian history it’s been flipped. Disabled people were labelled the “weaker parts,” treated as needing special compensation, and used to justify conditional inclusion. Strength was celebrated, disability treated as inconvenient, and worth decided by ability.

None of these texts intended to rank bodies or suggest some people bear God’s image more fully. That's generational, millennia-long, inherited cultural ableism—from pulpits, Bible studies, and casual comments about strength, Independence, productivity, normality—projected onto Scripture.

Three patterns emerge.

1. Cultural ideals became biblical interpretation.

When a culture prizes strength, speed, independence, and productivity, disability is read as a deficit.

2. Metaphors were mishandled.

When Scripture is read only at surface level, without theological depth, disability becomes a literal verdict on neurodiverse and disabled people.

3. Purity logic was universalised.

Temple rules about priests and blemished sacrifices treat disabled people like defective animal offerings, creating a hierarchy of ministry worthy bodies. That logic still shapes our priesthood laws, including Canon C4 paragraph 3, requiring candidates whose “physical or mental infirmity” is judged to hinder their duties.

[Image 2. A screenshot of Canon law. C4, paragraph 3. It states "No person shall be admitted into holy orders who is suffering, or who has suffered, from any physical or mental infirmity which in the opinion of the bishop will prevent him from ministering the word and sacraments or from performing the other duties of the minister's office."]

These patterns appeared in the recent Fearfully and Wonderfully Made report, which documented how these distortions still shape clergy and congregational life.

The result is a tragic inversion of the doctrine of the Image of God. Disabled people were told they are less capable, worthy, or able to represent God.

Discussion. Lets take 5 minutes to discuss these 2 questions.

1. How have these distortions shaped the way people read Scripture and see disabled and neurodivergent bodies?

2. Which distortion felt most familiar to you, and why do you think it has lasted so long?

If you would like to read part 2 or part 3, you can by clicking the links here.

Shining a Light in the ENABLE Team.

2026-08-11T08:30:00.000+01:00

I’s 7.19 am, I’m on the train, and I’m heading to The Living Well in Nonington, Canterbury. It feels strange to write that sentence as it carries more weight than a simple blog post entry. This is something I have longed for, as I prepare to give a bible study at a disability workshop. I’ve not publicly spoken outside of church in years, yet here I am, reading my notes, rehearsing, and trying to steady my anxiety.

My life has always been shaped by disability. As you know, I write about FSHD, where my muscles degenerate faster than most. My disability is not static. It’s progressive. Every year takes something new and I must adapt again. I also write about my recent ASD diagnosis and how it shapes my thinking and communication. Disability has never been a side note in my life. It has been the lens through which I see everything. So when disability touches my faith, theological studies, calling, or place in the Church, I must acknowledge it here.

Alongside my health, I’ve also written disability topics about independence vs autonomy, presence vs participation, able bodied privilege equality vs equity. I’ve written about how the Church sees disability and how it often fails to see it at all. I have written about the harm caused to people like me, as mentioned in the Fearfully and Wonderfully Made report. All of this has shaped me, my theology, and my calling.

So today matters.

I’m part of the ENABLE team under Melissa, the disability advisor for Canterbury Diocese. She is wonderful. I told the bishop in February that we needed someone in this role and a team of various disabled individuals. She agreed. Now Melissa is here. I, of course, couldn’t miss the opportunity to be part of it. It feels like the first time in a long time that something has moved in the right direction. Not perfectly. Not quickly. Yet still moving.

Melissa wants us to roll out disability conferences across the diocese. Our hope is to engage and educate everyone. Clergy. Lay ministers. Congregations. Anyone who wants to understand disability better, build a Church that is accessible, welcoming, and be honest about the barriers disabled people face. We talked about doing a test run. That is today.

My role is a Bible study workshop based on the theme Made in the Image of God. I’ve written it in three parts. The first looks at distortions about disabled people that have crept into Scripture through interpretation rather than truth. The second explores what it really means to be made in the image of God. The third asks how the Church can move forward and embrace disabled and neurodivergent people with genuine welcome rather than polite tolerance. I'll share these here, and hopefully the links are above.

I’m excited, but incredibly nervous.

It feels significant to be doing this after all this time and offering something that comes from years of lived experience, theology, and of navigating a Church that has not always known what to do with disabled bodies or disabled minds. I want people to understand that disability is not a problem to solve. It’s a reality to honour. A perspective to learn from. A gift to the Church when the Church is willing to receive it.

I also want people to understand the urgency. My FSHD is not gentle. My body is changing faster than most and my future as a priest depends on a Church that understands disability not as an obstacle but as part of my calling. I want to know that I have a future in an accessible Church. Not just as a disabled person, but as a priest who is disabled.

Today feels like a step toward that future.

I keep thinking about the phrase Tim gave me. Shine a light. Not fight. It has stayed with me. Fighting drains me and makes people retreat into process. Shining a light is slower, calmer, and harder. It invites people to see what they have missed and walk with, but not against, others. Today is about shining a light on what disability really looks like in the life of faith. A friend is running a sensory based creative workshop, myself this bible study, and Melissa looking at prayer from the disability perspective.

I don’t know how this will go or how those there will respond. I only know that this is part of my calling and this is something I’ve needed to do for a long time. Disabled people deserve a Church that sees them, hears them, and values them. I want to be part of building that Church.

I am grateful to be here, teaching, and shining a light.

Maybe that’s enough for today.

To read Part 1, 2, or 3, click the links here.

A Rose by Any Other Name

2026-08-08T10:31:47.347+01:00

Names carry stories, hold memories, and people that shape us. Growing up, I had many different names. Many that I didn’t value until adulthood.

Before I was adopted, I was Daniel Sexton/ Foster, depending on which paperwork you look at. Once I was adopted, I became Martyn Kitney. Even then, that name was hardly used. Due to Back to the Future, I became Marty at school until sixth form, when it became Mart.

I don’t know why my name had a Y. My mum would tease that every name, including my middle name, had a Y in it because I was a troublesome kid, which made her say, “Why, Martyn, why?” So the Y in my name was justified, but I’ll add that to the many things I wish I knew.

Yet close family members, like Mum, Dad, Aunts, and Uncles, called me Little Mo or Mo.

[Image 2. Me as a small child. Capturing myself as Little Mo]

Two stories exist for it. One says it was linked to tennis player Maureen Connolly, known as “Little Mo.” The other says I wasn’t able to say Martyn and due to delayed, and likely ASD‑related, speech issues, I said Mo instead.

All I know is that to the outside world I was Martyn, Marty, or Mart. Inside my parents’ house, I was Little Mo.

I reached fourteen when that changed. My Aunt and Uncle, their daughter, and her children came to stay from Wiltshire. I tried asserting my grown‑up teenager image and asked them to drop it. They agreed, but not fully. It was no longer Little Mo. It was just Mo. So it carried on and I accepted it.

I never appreciated how precious it was. I remember the boys’ mum was there, so I must have been nineteen or twenty. My Aunt and Uncle were visiting again and Mum said, “Call Mo, tell him dinner is ready.” The boys’ mum walked in and said, “Mo, dinner is ready,” only to get told off. She couldn’t call me Mo. She never earned it. I was still only Martyn or Mart to her.

Then Mum died. The person who always called me Mo no matter what. Dad did, but it wasn’t really his thing. He would call me it when speaking to my Aunt or Uncle, but I was still Martyn. When his memory deteriorated thanks to dementia, Mo faded and I stayed just Martyn.

This left only three people who would call me Mo. My Aunt Christine, Uncle Geoff, and their daughter Tanya. I say Aunt and Uncle, but Aunt Christine was Dad’s first cousin. They grew up together like siblings due to wartime measures and her dad passing away. So it was always Aunt and Uncle. Aunt Christine and Uncle Geoff had five daughters. Tanya is the only one who still calls me Mo. The others reference it, but face to face, I’m still Martyn.

[Image 3. A picture of me with my Aunt and Uncle taken in 2024. From left to right, Uncle Geoff, myself, Aunt Christine]

I love that side of the family. They always visited us growing up, were fun, and loved me as much as I loved them. They all knew me as Mo. Yet now I’m forty‑three, older, with kids of my own, and an equal grown‑up, I’m Martyn. Mo, the indoor secret name, is now left to two people. Aunt Christine and Tanya, since Uncle Geoff died last year just shy of his ninetieth birthday.

It’s strange. A name that was your main name for years becoming an artefact held by only two people.

Hannah has been wary. I think the boys’ mum story scared her. She doesn’t want to say it and upset me, or worse, say it and be rejected.

She turned my fourth birthday VHS into digital. She put my headphones on me and the words, “I can’t hear anything Mo, why aren’t you talking?” rang out in my mum’s voice. A voice I hadn’t heard for twelve years. To hear it again meant everything. It brought my name and the love that came with it back.

[Image 4. A still photo taken from the 4th birthday party the moment my mum called me Mo]

We visited my Aunt last weekend. Her daughter said the same. She likes Hannah and can’t see why she can’t use it.

We will see if she does. Someone has to. It saddens me to think that a name carrying so much love is barely used and will eventually fade.

Names carry stories, hold memories, people, and moments that shaped us. Mo has carried all of that. It’s held childhood, family, love, loss, and the quiet thread of belonging that ran through my life. It isn’t just a nickname. It’s a piece of my history spoken out loud.

I don’t know how long it will last or who will say it in the years ahead, but a rose by any other name would smell as sweet, and I carry mine. Whether I am Martyn, Mart, Marty, or Mo, I’m still me. Loved, held, remembered, and shaped by every person who ever spoke my name with affection.

Maybe that’s enough. Maybe I’ll always be Mo.

When the Church Acts: A Response to the New Clergy Conduct Measure

2026-08-05T01:30:00.000+01:00

The Church of England, through the General Synod, has approved the new Clergy Conduct Measure, and I felt something I didn’t expect. Relief. Not because the system is perfect or harm will suddenly disappear. Relief because the Church is naming what many of us have lived through for years. It’s listening and acting.

I’ve written openly about spiritual abuse, institutional harm, the Fearfully and Wonderfully Made report, and ableism for over a decade. I’ve named childhood trauma, safeguarding failures, coerced confession, weaponised healing, and the long shadow of Leviticus 21 that still shapes how disabled bodies are treated. I’ve written about “Simon,” the priest who mocked disabled people, blamed us for lacking faith, used demons and evil spirits as explanations for disability, and pushed exorcism without training. He then blamed us. He blamed anyone who didn’t fit his theology. They always “had the devil in them.”

He fractured our parish, lied to our sister church, abandoned us, and spread narratives that made us look like the problem over a nine‑month period while there were moments that allowed him to do that. Families left. Women were harmed. LGBTQ people were diminished. Disabled people were used as jokes or spiritual warnings. When I met with the bishop during my ordination process, she agreed that these actions were safeguarding and spiritual abuse, even when I didn’t name him or this incident directly. Despite everything that went wrong in that meeting, this was a positive. Yet he resigned, crossed diocesan lines, and is now an associate vicar elsewhere. No accountability. No justice. Just movement. One that leaves survivors. A pattern the Church unfortunately knows well.

This is why the new Clergy Conduct Measure matters.

The Church Times article outlines the new rules. Complaints must be dealt with “justly, expeditiously, and proportionately.” Timeframes are short. Investigations must be completed within months, not years. Misconduct decisions must be published. Case‑management powers mirror best practice in secular courts. Safeguarding concerns, criminal conduct, and serious misconduct cannot be hidden. The rules are “deeply mindful of the humanity of everyone involved,” protecting the vulnerable and defending clergy against weaponised complaints.

For someone like me, who has lived through the consequences of a system that didn’t act, this is huge.

If these rules had existed when Simon arrived, everything could have been different. His behaviour wouldn’t have been dismissed. His actions wouldn’t have been quietly nodded toward the code of conduct without follow‑through. Yes, that’s all I got: “Martyn, I don’t think this is safeguarding, but you should look at the code of conduct of a priest.” If this Measure existed then it could have stopped his actions.

With it, the lies, division, spiritual abuse, ableism, harm towards women and LGBTQ people, our church abandonment, and the narrative manipulation would have been addressed. Not whispered about or tolerated. Addressed.

The Church is recognising that harm doesn’t always look like headlines. Sometimes it looks like a joke about disability, a healing narrative that blames disabled people, a priest using demons to explain someone’s disability, and sometimes it looks like a community being split apart because accountability threatens someone’s power.

That was his issue. He wanted us to stop streaming our services to elderly and disabled members who were unable to attend in person. It’s a resource. For him, it was accountability. Without it, he could say and do whatever he liked and dismiss anyone’s complaints as misunderstandings, personal issues, or even blame the person. Just like he’s done before.

The new Measure doesn’t fix everything, but it acknowledges that subtle harm can be spiritual, institutional, and damaging. It acknowledges that clergy can misuse power, that complaints need structure, clarity, and urgency, and that victims and survivors deserve justice.

Archbishop Sarah Mullally leads this shift. She understands safeguarding, chronic health, carers, and institutional bias. She knows the Church must change, especially following her predecessor’s exit. She’s becoming the beacon the Church needs. Safeguarding is no longer a footnote. It’s becoming the centre.

This matters for survivors. It matters for congregations who have been dismissed, ignored, or blamed, for those who have been told their harm wasn’t “serious enough,” and for those who watched clergy move dioceses and start again without consequence.

The Church is learning to shine a light, not hide the shadows.

I’m not naïve. Systems fail. People fail. Harm still happens. Yet this Measure is a step toward a Church that listens, protects, acts, understands mandatory safeguarding, and recognises spiritual abuse and misconduct. This is a Church that refuses harm to slip quietly across diocesan borders.

This is a positive and necessary step. Being on the ordination process, completing the Carousel Conversations, and growing into my vocation as a priest, I welcome this. I’m committed to following it, not just for myself, but for those like me who deserve better.

The Church is moving in the right direction.

FSHD: What’s Changing

2026-08-04T10:27:24.503+01:00

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.

FSHD (Facioscapulohumeral muscular dystrophy) is broken down into different areas, beginning with the face (Facio). I’ve noticed some shift. My mouth drops when I sleep. Unlike people I know, I can close it when I’m awake, but when I relax it naturally opens and drops.

[Image 2. The image focuses on my the lower face and mouth, illustrating facial weakness associated with FSHD. The slightly open lips and visible facial hair highlight reduced control and movement, reflecting difficulties with whistling, using a straw, or puckering. This photo was taken in 2021. It's visibly the same despite being weaker]

At night I drool and end up waking with pool of drool around my collarbones. I hate it.

My eyes have worsened too. I’ve used an eye mask for over a decade, but Hannah and the kids have noticed that if I fall asleep early or nap without it, my eyelids close halfway and my pupils roll back. My speech has also shifted. I mentioned this in March. It’s still the same letters, but I stop, change words, and say things wrong more often. Unless you know, you’d think it’s mispronunciation, but it’s not.

Shoulders (Scapulo) and upper back are next, causing my neck to worsen. Despite my neck twitching before 2014, it’s progressed. Hannah regularly applies deep heat to my neck and shoulders to help. The neck muscles weaken and pull forward, which forces the shoulders to compensate and makes me pull myself upright. We have a lovely family photo from Wrexham at Hannah’s brother’s wedding. I was in my manual chair, without the head support of my powerchair, my neck dropped forward, and it cuts my neck out of the photo. The photo highlighted how much it’s declined, especially compared to decades‑old photos.

Now.

[Image 3. A group photi of the six of us as we pose together outdoors in front of a decorative black metal gazebo. From left to right standing, James, Will, Hannah, Midge, and Arty. I sit in a wheelchair at the front. We are dressed in semi‑formal clothing. This highlights the neck change i describe above]

Below is 2022. Showing 4 years difference and my neck holding head up.

[Image 4. A group photo of the six of us at Rochester pride 2022. From left to right standing, Hannah, James, Will, Midge, and Arty. I sit in my chair in front of James and Will. The kids are wearing sexuality flags and James and Will have their flags painted on their face.]

FSHD then moves to the stabilising torso (humeral) region. This is the biggest and quickest degeneration. Despite writing about it in May, it’s weakened more. Travelling in my powerchair has become harder. I wrote in July that travelling isn’t easy. People make jokes, but the reality is different. I regularly navigate uneven curbs, cobbles, patchwork paths, bumpy pedestrian islands, and slopes that jolt my core and cause me to slip and slump in the chair, making me sore and physically tired.

It’s become so difficult that I now wear a Double Pull Lower Back Support Lumbar Brace. It wraps around the torso and uses adjustable tension straps to stabilise weakened muscles. It supports the lumbar spine, pulls the core into alignment, and reduces the wobble, slip, and fail. It helps, but it highlights how much strength has gone and why I tremble and almost fall as I try to hold myself upright during transfers.

[Image 5. A close‑up of the back and side of a person wearing a black and blue lumbar brace. The belt’s elastic bands and adjustable straps provide compression and support to the lower back, symbolising the physical adaptations used to manage FSHD‑related weakness.]

My MD belly has also worsened. People think it’s fat or weight gain, despite losing weight. When I wear the brace, everything pushes in and reshapes. Without the brace, I fit a stretchy pair of thirty‑six‑inch waist jeans and need large shirts. With the brace I’m a thirty‑four‑inch regular fit waist and medium shirts. Instead, my back curves, changes shape, and arches, pushing my stomach out.

[Image 6. The image highlights the humeral region, showing visible muscle weakening and atrophy around the neck, shoulder blades, and upper arms. It visually represents the physical changes caused by FSHD, focusing on the biceps and triceps areas. At the abdominal area you can see how my MD belly pushes out and bulges, pushing down and forwards. Whereas, you can also see the curvature of my spine when its misaligned. These photos were taken in 2021. This is worse now.]

FSHD then moves into the arms and hands. I feel this loss personally. My right hand has worsened. I struggled typing last year at college. I’m also struggling to play the piano, which breaks my heart. My fourth and little finger no longer straighten properly. Unfortunately, the shape I use to drive my chair matches my hand shape, making the repeated posture waste and weaken the muscle. The joystick posture shows again when I write, hold my phone, and use utensils. I tried correcting it. It mostly worked, but it’s off. My writing is messier than normal, which in turn makes me worry about drawing. Then there’s my left wrist, which is currently in a support strap. Without realising it, I’ve stopped using my right arm as much and compensated with my left.

FSHD eventually reaches the legs. Mine have thinned, weakened, and bowed more. When I stand during transfers my legs start shaking and pull me backwards. Hannah had to grab me this week before I toppled backwards. She thinks it’s core related, but I feel my legs pulling me back. My right ankle also gives way repeatedly. I end up standing with my left foot flat and the rest of my weight on the buckled ankle, which causes a sharp, deep, and unbearable painful throb.

This core and standing issue has also changed something else. We converted our bathroom into a full wet room in January and the Occupational Therapist pushed for a hoist. I hate them. They remove independence. I knew I’d need one eventually, but I was ok. I thought I had time. I don’t. I hate to say it, but it’s so bad we’ll need one soon.

I’ve written openly and honestly about my health for years, but never really tracked it. I need to do it to pinpoint those changes.

This is my FSHD now. It’s not dramatic. It’s simply the truth.

Maddy Time: Spiderman Brand New Day

2026-08-02T01:30:00.000+01:00

Spoiler Warning: This post contains plot details from Spiderman: Brand New Day.

On Friday, Midge and I went to see Spiderman: Brand New Day, and it felt like the perfect way to spend our last bit of time together before she heads to her dad’s. We’re both Marvel fans, and when we do get some Maddy Time, watching movies is our thing. It’s how we connect. So, for me, this film mattered before we even sat down. I get time with my amazing daughter.

Brand New Day is already getting strong reviews online. People are calling it Tom Holland’s most emotional performance since No Way Home, and I agree. Although I think No Way Home was way more emotional. He has this way of carrying sadness that feels real. He did it with Aunt May’s death. That still gets me every time I watch it. That kid is such a good actor. He does it again here. Watching him alone, cut off from his friends, still loving MJ from a distance, desperate to be friends with Ned again, being tricked and broken again, hit me harder than I expected. There’s something about Tom Holland’s Peter Parker that always gets me. He plays vulnerability without making it weak and heartbreak and hope without making it dramatic. He manages to make me feel every part of it.

Sitting next to Midge made it even better. She’s my daughter in so many ways. Her humour, her likes, her wicked cackle, the way we joke around in a way that others would probably question or at least raise an eyebrow at, all of it is us. She’s going to her dad’s for two weeks, which is a strange thing for her, but she and I both have hope that it will go well. I won’t pop that bubble. Their relationship has been difficult for years. He thinks he’s pushing her to be better, but it breaks her down instead. The promises he doesn’t keep. The comments that hurt. The moments that should have been supportive but weren’t. It stacked up and up. She even wrote a list naming it all. Last year was awfully hard for her. She tried talking to him. That didn’t work. She even stopped talking to him for a long time because she couldn’t keep trying. He was just unnecessarily horrible. He said things that he shouldn't have said, especially if he knew hos daughter.

They eventually made up, but she knows her father, accepts that he is just the way he is and takes what she can, when she can. She has her barriers up with him. She wasn’t going to go originally, but Arty convinced her to stay at their dad’s. At Christmas she went down but stayed with Hannah’s family. You can imagine how much this visit weighs on me. It's always been difficult for me. Nine years of hassle, of her trying and making the effort, and hoping he will be different. Going back now is a big step. She’s 18. An adult, but still my daughter. I have always wanted to jump in and say something. I don’t. It’s not my place. Although Hannah did give him an option to speak to me last year. He refused. He didn’t think he could handle any criticism, even if I meant well. It doesn’t mean I don't worry. I only want him to be is the father she deserves. I shouldn’t have to cover the space he lacks. I'm proud that I do, but I genuinely want it to go as well as possible. For her sake.

That’s why I wanted us to have some time. Not dad and daughter dates. That doesn’t fit us. We have Maddy Time. Maddy is the name she gave me when she was little. Martyn‑Daddy = Maddy. A name I took on because I didn’t want her dad displaced, even though she wanted to call me Dad after the fourth time I met her. She still calls me Maddy nine years later. It’s ours. I love it. Just as I know she loves to still be called Midge.

Brand New Day gave us exactly what we needed. A story about love, loss, hope, and trying again even when life feels heavy. Watching Peter Parker fight through loneliness while still choosing kindness felt close to home. Watching him carry heartbreak while still protecting others reminded me of her. She’s been through so much, yet she keeps going. She keeps trying. Peter Parker's actions reminded me a lot about her.

We talked theories on the way there. Both struggled on the really hot bus. We laughed at the funny parts. Then chatted about it after. It was good. It was us.

She’s going away for two weeks. It will fly by. I’ll still miss her. I always do. She’s my daughter. I’ll still text her. Just to keep our normal style of humour running even if she is down there. Watching Spiderman with her before she left felt like the perfect way to hold a moment with her before she went.

Brand New Day was brilliant. Maddy Time was even better.

[Image 2. Midge sits on the left as she leans into to me on the right wearking a white and grey shirt, a dark tshort, and a black Wrexham hat. The photo is dark as we sit in the screen room waiting for the end credits to play]

Why I'm Called to be a Priest

2026-07-30T10:24:12.567+01:00

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.

My childhood was a mix of Salvation Army, Methodist, Church of England, and Jehovah’s Witnesses. By my teens, church and God were bad words in my household. Yet when my FSHD began, long before we knew what it was, the little red New Testament from secondary schools became a lifeline. Thirteen years passed. I tried Alpha courses and was repeatedly asked to leave. I didn’t fit the mould. Eventually, I found a church home. I started writing. This blog began, I explored my faith, and tried understanding the God who called before its 2013 relaunch into lifestyle, parenting, disability, and home schooling.

I first sensed God calling me to priesthood in 2010. It wasn’t dramatic or a voice. It was a feeling. A certainty. A knowing that couldn’t be argued. Others reinforced it, including the priest at that church. It seemed set.

Then 2011 happened. My marriage ended. My world turned upside down. My mum died the year after. I became an alcoholic. I was sectioned and misdiagnosed with personality disorders instead of ASD. Everything fell apart.

I kept my faith, but I doubted my calling. I couldn't embrace it. I felt unworthy. Preaching and teaching were the parts that felt right, but my life didn’t seem to match the image of a priest. How could a disabled, divorced, recovering alcoholic, home‑schooling two little boys, with mental health issues ever be a priest? I wasn’t a perfect Christian. My friends even called me the best worst Christian. Then, with Scripture being used to tell disabled people they were unfit for service, the more I degenerated, the less possible it felt.

Yet my calling never faded. It stayed like a pulsing lighthouse. When Hannah and I started dating, I told her early on. It didn’t run away. She embraced it fully.

Then COVID hit. The church needed people who understood online spaces. That was us. Blogging taught us social media and online communities. Our late priest, Sue, asked us to run the church’s Facebook and Instagram. We did. It exploded. Thirty thousand people worldwide saw what our little English church was doing monthly. We just did what we knew. God showed us how small the world is compared to Him.

One Sunday, during worship, after sharing what God had done online, I felt God saying, “You’re ready now.” Not because I’d become perfect. That above personal still existed. If anything, it was worse. I was now in a relationship with another divorced person navigating a blended family. Nevertheless, something has shifted. God had been preparing me. He stripped away unneeded aspects, sanded down rough edges, and polished others in that decade, showing me who I was and who He needed me to be.

Disability played a huge part. For years, churches tried healing me. Removing the gift God gave me. My disability, however, became the very thing that connected me to those who are shut indoors, isolated, overlooked, or forgotten. Online community became a lifeline. Blogging showed me that. A simple “good morning” post can be pastoral care. Social media isn’t a noticeboard. It’s a neighbourhood. People want belonging, not content.

The next turning point came when disabled and neurodivergent people started coming to church. Half our congregation is disabled or neurodiverse now. Brokenness is what Jesus carried. He still holds His wounds. I realised I could hold mine too. Brokenness isn’t a barrier. It’s a bridge. He showed me how being the best worst Christian brought others in.

I started mentioning my calling more. Testing the waters. People worried about my health as “my life was hard enough.” That changed when David, a priest helping us during the “Simon” drama, put me forward for it.

Even then, I sold myself short. I applied to be a deacon, not a priest. Years of didability comments made me doubt what I could do. I’d been told for years to explore lay ministry because it was “easier”. Even the bishop said it back in February. That’s not what I’m called to. Disabled priests have always heard this. The Fearfully and Wonderfully Made report names it clearly. Ableist assumptions about what disabled people can and can’t do. Yet God kept saying, “Priest.” The Carousel Conversations results came in. They said priest too.

I’m theologically minded. I love Scripture and teaching the truth of what was written, not the misinterpretations that get misused. I feel called to find the rejects. The disabled. The neurodiverse. The broken. The ones who think churchor God isn’t for them. Church is an ecosystem. Fresh expressions, like Messy Church, cathedrals, or online communities. I speak for those who feel lost those spaces.

The Ordinal says priests are to proclaim the word of the Lord, teach, shepherd Christ’s flock, search out the poor and lonely, be servants, and be messengers and stewards. That’s where I fit. Despite feeling unworthy, my brokenness isn’t a disqualification. It’s preparation.

I didn’t wait for God. God waited for me. He spent sixteen years calling me. The least I could do is pick up and answer that call.

The Dentist Visit

2026-07-28T01:30:00.000+01:00

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.

People may assume it’s an autism thing. Dental environments are full of bright lights, close faces, cold metal, chemical smells, and loud drills. Those parts are unpleasant, but they’re not the main issue for me. The bright light in my face is something I really dislike, but I’m not overwhelmed by the sensory intensity of the environment in the way many autistic people are. My difficulty sits somewhere else.

The feeling of someone exploring my mouth is what I struggle with. A rubber glove against my cheek makes my skin crawl. The suction tube bothers me even more. It pulls at my tongue and cheeks in a way that feels unpredictable and out of control. I can cope with the metal mirror. That part is fine. The problem is the regular cleans. When you cannot use your arms properly, you cannot maintain your teeth the way you want. I try. I invested in an electric toothbrush today after my dentist recommended it, and hope it helps. Even so, the scraping tool for plaque is the real challenge. Every stroke against my teeth makes me grip the chair and wait for it to be over. The mouth is one of the most sensitive parts of the body, so heightened oral sensitivity makes complete sense to me.

Strangely, I don’t mind the dentist being close to my face. The hygienist is different. Her proximity unsettles me. I don’t know why. Maybe it’s the suction. Maybe it’s the lack of precision. The dentist moves with intention. She knows exactly what she’s doing. The hygienist obviously does too or she wouldn’t be working there, but it feels less controlled. I end up swallowing bits of water and plaque while she works, which only adds to the discomfort. I try not to gag, but it’s hard.

Being a powerchair user adds another layer. I don’t transfer to the dentist chair any more. I don’t even think my weakened core would let me. I drive as close as possible, recline my own chair, and pull myself back into a semi‑lying position. Once I’m back, that’s it. I can’t adjust. I can’t reach the button to change the function. I have to ask the dentist to do it. I feel restricted in that position. I can’t move away if something hurts. I can’t lift a hand to signal discomfort. I’m stuck while rubber gloves press against my mouth, pull my cheeks, and tools scrape at my teeth. The lack of physical control is difficult. I try and cope. Push through it. I sing worship music in my head, close my eyes, focus on God, and tolerate as much as I can.

Childhood plays its part too. My teeth have always been strong. I’m told this every time I go, and I’m grateful. I’ve only ever had one filling. Hannah has had far worse experiences and has needed major work, which deepens her fear of the dentist. My problem isn’t decay or pain. It’s memory.

My baby teeth didn’t fall out naturally. Strong roots meant they stayed firmly in place. I remember only three coming out on their own. An apple and a piece of raw carrot claimed two. One wiggled out at school. The rest had to be removed.

OK. That's possibly an exaggeration. I probably lost more naturally, but I don’t remember that. I do remember spending a lot of time in the dentist’s chair as a child, being injected and having teeth pulled. I collected pieces of a Lego medieval set because of it. Every visit earned me another item. If you pushed me, I’d say at least six or seven of my baby teeth were removed, possibly more. Some of it was due to strong roots. Some was because adult teeth erupted in the wrong position. Delayed exfoliation might explain it. This is just where some people don’t naturally lose their baby teeth. I don’t know. I only know that I was there often, and it shaped how I feel now.

If you had to go through that, I’d assume you wouldn’t like the dentist either. It’s no surprise that I dislike going. I’m thankful my teeth are strong. I’m thankful I don’t need the work Hannah does. I simply don’t like the experience. I’m not sure anyone does.

Maybe it’s not fully an autism thing. I’m sure some of those bits at the start contribute, but not completely. Some of it is childhood trauma. I dread finding out I need work, despite having good teeth and only ever requiring one filling. Some of it is the lack of control.

Maybe it’s a human thing. The invasion. The vulnerability. The strange feeling of someone working inside your mouth. The necessity of it. The way we endure it because we must, not because we want to. Yet we still go, open our mouths, and trust the hands that help us. Maybe that’s the part that matters most.

Either way, I'm grateful I can wait another six months.

Emotional Overwhelm

2026-07-25T01:30:00.000+01:00

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.

Emotional overwhelm has always been part of my life. My ASD assessment described how I suppress emotions until they build and how anxiety rises when I struggle to understand people’s responses. It has been this way from childhood into adulthood. Transitioning between year groups and schools, constantly struggling with friendships, leaving my friends and family for university, my first marriage ending, and my mum dying all triggered me.

What seems to be a problem is that while I experience emotions, I, according to my ASD assessment, can’t quite grasp them. I feel sadness, anxiety, and overwhelm sit physically, but rather than explain them, I can only respond how they physically impact me, like how sadness and anxiety is a chest feeling. I never had the language for anything deeper. When this all becomes difficult, the overwhelm hits, and a clear sign is always the unnecessary, long worded communication. That pattern has been with me since school and is something I explored in my neurodivergent communication post.

This week showed how quickly overwhelm can rise when fairness is threatened. I noticed patterns others missed. Hypocrisy, manipulation, personal vendettas and unnecessary judgement. These things have always bothered me more than they seem to bother other people. I wrote about this in my reassessment post, describing how fairness feels like a rule written into my bones. When people twist situations or act unfairly, my mind locks onto it. It’s not stubbornness. It’s how my brain processes justice, clarity and truth.

It wasn't just the game. I have been juggling my physical health, the stress the teens sometimes bring, managing their ASD and making sure one doesn't trigger another, avoiding me triggering them or them me, church activities, friendships, and ministries, and, just like the game, navigating the social issues within our church community, especially those who apply unnecessary pressure and stress, just because they too struggle regulating too.

One of the clashes this week involved a friend. He’s a good guy, yet he becomes defensive when challenged. I become blunt when clarity matters. We collided. He felt attacked. I felt frustrated by the hypocrisy I saw. The worst part was that he was not the main source of the drama. He simply stepped into the wrong moment. My other friend Longhorn (his game handle) covered for me, even though he’s friends with the guy. It was kind and necessary. I reached the point where I knew I would snap if I stayed. So I stepped back. It was the right choice.

Stepping back is one of the ways I cope. My assessment described how I isolate myself, but that sounds like a negative trait. I use noise cancelling headphones and follow predictable routines when things become too much. These strategies help. They don’t remove the overwhelm. They just stop it from spilling into other areas of life. I still feel the anxiety in my chest. I replay the injustice. I struggle with the parts of humanity that make no sense to me. I’m 43 and still don’t understand why people choose manipulation or personal vendettas. I understand conflict. I don’t understand unnecessary cruelty.

For years these reactions were framed as emotional instability. My 2015 post on Dependent Personality Disorder shows how I interpreted everything through that lens. I described myself as clingy, needy and unable to cope alone. I wrote about panic, fear and distress. I believed it. I had no other language. My ASD assessment explains why that diagnosis never fit. It states that my difficulties are not better explained by a mental health condition and that my overwhelm is linked to sensory processing differences and a need for sameness. It also notes that I manage well in stable and predictable environments. That’s not EUPD. That's autism.

My post reflecting on that old diagnosis shows the difference clearly. The traits I described in 2015 were signs of autistic burnout, not personality disorder. Routine disruption, emotional flooding, shutdowns, sensory overwhelm and literal thinking were all present. They were misinterpreted. My life stabilised. The dependency didn’t remain. Autism did. They’ve been consistent since childhood. My ASD diagnosis, communication, and reassessment posts show how the picture was always there.

This week didn’t expose instability, but autistic traits I’ve carried my whole life. The need for fairness. The difficulty interpreting tone. The bluntness that appears when clarity matters. The overwhelm that rises when social demands spike. The anxiety that sits quietly underneath. The need to step back and regulate. These aren’t signs of emotional disorder.

I’m not broken or unstable. Since this diagnosis I’m finally understanding the map. This week was difficult, but it made sense. I can see the pattern clearly. I can see myself clearly. I feel calmer and more stable, just by reflecting back through that lens, and knowing my regulation techniques will and have helped.

Fearfully and Wonderfully Made Report: What you need to know

2026-07-22T01:30:00.000+01:00

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.

The report explores the decade long study of wellbeing and flourishing of disabled and neurodivergent clergy as part of the Living Ministry research programme. The researchers spoke with twenty‑seven clergy who are disabled or neurodivergent. They call them dialogue partners because they weren’t just interviewees. They shaped the findings, corrected assumptions, and co‑created the knowledge. The small number is telling. Many clergy are still afraid to declare disability or neurodivergence because they expect ableism or the very problems the report names.

The report makes one thing clear. Disabled clergy are not struggling because of their “impairments” (I hate that institutional term). They’re struggling because the Church’s structures, culture, and theology, alongside adaptions, practices, and policies that don’t allow full participation, disable them. That distinction matters. It shifts responsibility from the individual to the institution. It’s not the person’s body or mind, but the inaccessible world around them.

The findings are organised into four clusters. Each uses Scripture in a deliberately jarring way to highlight how Scripture is often misused against disabled people.

1. Barriers to discernment

Disabled and neurodivergent people often find the discernment process confusing and culturally narrow. Many clergy said no one explained how it worked. They were expected to pick it up by osmosis.

There were almost no role models or mentors. Training institutions often lacked disability awareness and some ordinands had to self‑fund neurodivergent assessments because their institution (TEI) dismissed their concerns. My experience embodies this. I paid for my assessment and sought disability support from Tim Goode. It was not straightforward.

2. Ableism and oppression

This is the hardest section to read. It describes how the Church’s culture prefers a particular kind of priest. Intellectual, middle‑class, neurotypical, invulnerable. One person said the selection process was skewed towards “intellectual introverts of a particular ilk.” I recognise this. I’ve often been nudged towards “lesser” roles because I don’t fit the traditional priest box.

Disabled clergy feel pressure to mask their needs. Some felt their disability was weaponised against them. Others were told to hide diagnoses during job applications. You can see why many chose not to participate in the research.

Both clusters show diminished physical, mental, relational, and vocational wellbeing.

3. Threats and opportunities for human flourishing

This section is more hopeful. It shows how physical disability and neurodivergence can be gifts for ministry. A statement before Archbishop Sarah stated it. Disabled clergy are often more approachable, model vulnerability, and embody inclusion. One person said, “The risen, ascended Christ still has wounds.” I had already been reflecting on that image months before in my Carousel Conversations.

The report also shows how resilience is misused. Disabled clergy are expected to cope rather than be supported. Many relied on chance relationships rather than formal structures. Some had to pay for their own physiotherapy or accessibility needs. This I feel is a statement of disabled life in general.

It matters for ordinands like me because the report describes the exact culture we enter and the barriers we face. It shows the assumptions people make about us and how our bodies and brains are misread. Exactly like my meeting with the bishop. The irony of her doing the very thing the report warned about, denying these issues even exist, and then being upset when I showed her it within the report.

4. Language and theology

The final cluster investigates how the Church talks and thinks about disability. Many clergy said the language is inadequate. Some prefer the social model. Others avoid disability language altogether.

The report highlights harmful theology. Disability used as metaphor. Suffering romanticised. Calls to “take up your cross” used to justify structural injustice. Disability Theology, when it is taught, gives disabled clergy a way to make sense of their experience, but it is rarely heard in parishes.

The report also celebrates progress. It notes that 13.2% of ordination candidates now declare a disability. It highlights innovation funding for neurodivergent formation, bishops appointing advisors with lived experience, and dioceses beginning to adapt buildings and training. These are hopeful signs.

It also reveals severe harm. One clergy was pressured into surgery during discernment and now lives with a life‑altering disability as a result. Many clergy felt isolated and misunderstood, that their vocation was questioned because of their disability, and that their wellbeing was eroded by structures never designed for them.

The recommendations are clear. Training for bishops and DDOs. Disability Officers in every diocese. Accessible buildings. Better support in TEIs. Proper routes to diagnosis. More Disability Theology teaching. Structural change rather than individual resilience. These are all essential if the Church wants disabled clergy to flourish. To her credit, my bishop has now appointed a Disability Officer and formed an Enable Team, which I’m part of. It’s a start.

This report gives language to experiences I’ve lived for years. It gives evidence to things disabled Christians have been saying quietly for decades. The Church has a chance to change.

I hope it takes it. If there are areas you want to know more about, let me know and I’ll write more posts.

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

2026-07-19T01:30:00.000+01:00

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.

The article outlines a clear direction. Neurodivergent people, lay and ordained, are purposefully made by God. Their experience enriches the Church. Barriers must be removed. Training must be shaped by neurodivergent people. Dioceses must appoint neurodivergent champions. Churches must listen. It’s a strong, hopeful and needed statement. It also calls the Church to challenge and transform unjust structures and processes that disadvantage neurodivergent people.

It sits alongside the Fearfully and Wonderfully Made report, which I’ve mentioned here a few times. The report names the institutional issues disabled and neurodivergent clergy face, the narrow gate of discernment, the lack of disability-informed oversight, the misinterpretation of communication, the harmful theology, the pressure to mask, and the emotional cost of navigating a system not built for us. It states that wellbeing is under significant risk because of inherited assumptions and processes. It highlights how disabled and neurodivergent clergy often feel unseen, unheard, or misunderstood. It names the need for training, champions, oversight, structural change, and a need for a Church that listens.

It also connects to the Church of England’s statement last week calling for neurodivergent-led training, diocesan champions, and the removal of barriers that prevent neurodivergent people from flourishing. That same Synod debate included Fiona MacMillan’s reflection on her ADHD, Tourette’s and Autism diagnoses as a “serial unveiling” of lifelong struggle, gradually learning to see herself as fearfully, wonderfully and intentionally made by God.

I understand this well. These points mirror my own experience. My ASD assessment explained lifelong patterns of communication, miscommunication, sensory needs, routines, overwhelm, and common associated issues, like writing long messages, oversharing, interrupting, misjudging gaps, struggling with implied meaning or sarcasm. It explained why my communication was framed as anxiety, dependency, and emotional intensity, instead of neurodivergence by the Bishop.

The article, however, highlights neurodiversity as a gift, echoing the report’s view that “disability and neurodivergence is a strength that brings different perspectives for ministry and thus facilitates inclusion.” My experience with the Bishop and Ordination shows how easily those gifts can be missed when the system doesn’t recognise them. I wasn’t treated as a neurodivergent person but as someone with an emerging mental health issue, despite fourteen years of stability. My ASD traits were misread as confrontation, clarity-seeking was misread as argument, degeneration concerns were misread as impatience, and communication was framed through a misdiagnosis instead of my present reality. None of this should have happened.

The discrimination named in the article and the report is real. It’s structural, interpersonal, cultural, and theological. It appears in the places where disabled and neurodivergent clergy are misunderstood, side-lined, or framed through outdated narratives. It appears when communication differences are treated as instability, assumptions replace listening, safeguarding is forgotten, and the Church says neurodiversity is a gift but struggles to recognise it in practice.

Disability-informed oversight, neurodivergent-aware communication, pastoral empathy, and a recognition of ASD traits should have happened. Separation of crisis-era diagnosis from present stability. A willingness to listen, understand, slow down, and see me clearly. The report outlines these needs. The Synod resolution affirms them. My experience shows why they matter.

I’m encouraged by the direction hinted within the article, hopeful that neurodivergent-led training and diocesan champions will change things, and glad the Archbishop is speaking openly. Her dyslexia deepens her calling. My ASD and FSHD deepen mine. I’m hopeful, yet cautious. Intent must become practice. Training needs to happen. Champions need to be appointed. Structures need to change. Discernment must be accessible. Communication differences must be understood. Disabled and neurodivergent candidates must feel safe. As Fiona reminded the Synod, the celebration of diversity and inclusion is meant to be a core commitment of the Church, and this needs to be seen clearly.

My experience shows the gap between policy and practice, where many still don’t celebrate that diversity. The article shows the intention, the report shows the need, and my story shows the reality still at risk.

Neurodiversity isn’t just a gift for the Church. It’s a gift for calling. My ASD diagnosis didn’t change my vocation. It clarified it. It explained the patterns that shaped my life, the traits that shaped my ministry, the moments I’ve been misunderstood, the resilience I’ve carried, the way I see the world, communicate, care, and serve.

The Church says neurodiversity is a gift. I’m choosing to believe that, live it, show others it, and hope that the Church will live it too.

When Driving Stops

2026-07-16T01:30:00.000+01:00

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.

Life works differently now. I travel everywhere by powerchair and train. I live in Rochester and worship in Sittingbourne, so my usual route is a twenty minute train journey followed by a thirty minute chair journey to church. It's predictable, works well most days, and gives me independence in a way that feels natural. I roll off the train, head through town, and arrive at church ready for whatever the day holds. It’s simple until my weakened core reminds me that simplicity has a cost. The pain is constant.

My ministry sits in Sittingbourne, so my travel sits there too. Youth group nights, meetings, trustee responsibilities at the community village hall, pastoral visits, the ordination process, and friends all take me back and forth. Canterbury’s hour travel is also part of that ordination and diocesan journey. Chair to station. Train to town. Chair to my expected place. It's a functioning system.

Driving is harder now. I can still drive with hand controls, but I'm noticeably weaker. I leave bigger gaps, drive slower, signal earlier, and take fewer journeys. My core makes every movement harder. Turning to check my blind spot pulls at muscles that recover slowly. I feel the strain for hours afterwards. I'm not unsafe, but I'm not the driver I was. I'm more cautious because I have to be. My reactions mentally are the same. My physicality is different.

The occasional incidents make everything more complicated. Most days the train is fine. Some days it's not. A cancelled train or an out of service lift turns a simple journey into a problem. On those days I rely on Southeastern's WAV taxis. They are brilliant and the drivers are kind. They get me where I need to be without fuss and still offer travel security.

Sometimes Hannah could take me, but her life is busy. She is a church warden and present for everything that role requires. She also has Arty’s football commitments. She balances both with care, but it means she cannot always drop everything to drive me somewhere.

Our car doesn't help the situation. It's a seven seater, but it is not wheelchair accessible. It only fits my manual chair. The manual chair isn't designed for my body anymore. It's lower, making lifting transfers harder for Hannah, but it hurts my back and core when I'm in it. The cushion is standard, not made to fit. The back support does nothing for my core. I can't self propel, so someone has to push me, removing my independence. Trips like Wrexham make the reality obvious. I spent the entire time in the manual chair because my powerchair is too heavy for the car. It is not sustainable. The pain outweighs its use, even if that’s occasional.

Motability allows WAVs for drivers and passengers. There are drive‑from‑wheelchair vehicles, internal transfer vehicles, and passenger vehicles, all designed for different needs. The scheme doesn’t block disabled drivers from choosing a WAV. It simply asks what works for your body, safety, and daily life. In my case, the passenger layout seems best. My strength has changed. My independence comes from the chair and train rather than the steering wheel. I could look at a drive WAV, but that limits Hannah’s ability to use it. Internal transfer vehicles sound ideal, but the reality of my core weakness makes that harder. Considering my health over the next three years, being a passenger makes sense.

All of this leads to one conclusion. I stop driving. It's not a dramatic decision. It's a practical one. I can let Hannah drive me on the days when the chair and train are not possible. Midge could help now she's passed her test, but I think it's three years minimum before she can be a named person on the Motability insurance. I can keep my independence by shifting how I access it rather than holding on to something that no longer works.

Letting go of driving is not giving up. It’s accepting that my life and my body have changed. I keep reminding myself that I’ve driven maybe five times in six months. In many ways, I’ve already stopped. I’m choosing an option that keeps me safe, mobile, and present. I’m choosing a future that works rather than a past that hurts.

I just need to get my head around it. I'm not losing freedom. I'm reshaping it. All around the active life I’m living.

When Honour Meets Barriers

2026-07-12T01:30:00.000+01:00

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.

On Wednesday I travelled to the hall with our church wardens to test the setup. I’m a representative for both the church and the hall, but the caretaker was already arranged to open up, and the setup was physical. I wasn’t really needed. I wish that was communicated beforehand. I wouldn’t have gone.

That journey matters. Travelling in a powerchair isn’t easy. People joke about “resting their legs” but the reality is different. I leave home 2 hours early. I travel 15 minutes to the station, early enough for the accessible team to put me on the train, travel 21 minutes on the train, then take the thirty‑minute drive in my chair to get to the church. I navigate uneven curbs, cobbles, patchwork paths, pedestrian islands two inches too high, and slopes that jolt my spine and weakened core. By the time I arrive my structure has slipped, and I’m slumped in the chair, sore and physically tired. I still have the return journey to face later.

[Image 2. In the middle of the path is a dented section of the path. At the end of the path is a small drop curb that allows a pedestrian to cross the road. On the other side is the accessible slope]

[Image 3. A pedestrian island that I have to use on my journey. It is not designed with wheelchairs in mind. It doesn't have official accessible drop curbs, the crossing is around 2 to 3 inches thick. In addition to this, the road is warn, with cracked holes around it. ]

[Image 4. This is the pavement i travel over. Drivers usually park here as to the right is a business. While cars can drive into the driveway which is situated on the right, they often park here, like the one in the image. I believe the constant car parking has created the damage shown in this image. Its uneven, bumpy, and difficult to navigate]

4 hours, there and back, of physical battering for something I wasn’t needed for. I take that journey several times a week for other church‑related events, some by choice and some not. They’re good people. I just don’t think the physicality crosses their mind.

The service will be busy. Able‑bodied people will arrive early, choose either a good pew or chair and get rewarded with comfort, visibility, and choice.

My space is imposed. On Sundays I park and sit where I can see, engage, and belong. That won’t be possible. I would block aisles and the entrance, and become an obstacle. So I’ll be placed somewhere out of the way, unable to see and participate equally. My autonomy removed and equity replaced with equality that doesn’t fit disabled bodies.

The “wheelchair spot” is in the left nave, at the end of a row of chairs once one is removed. The rest of the seats are pews. I will be behind pillars, and standing and seated bodies higher than me.

If I want the best inaccessible spot, I have to get there early, but getting there early also creates problems. Until the row of chairs fills up, I instantly become an obstacle, moving for those filling those seats, apologising until I can stop being a problem.

Able‑bodied people won’t do that in the pews and chairs. They’ll move and slide along for space. They get their choice. They arrived early. All without being a problematic obstacle.

I’m an obstacle if I go where I normally do, and when I’m in my imposed place. Unless someone has lived this, they won’t understand why it matters. Able‑bodied people get choices. Wheelchair users don’t. If I argued, I’d be told about the church design, layout, and limited options, but best case adjustments and reasonable positive steps. The same reasoning for denied public accessibility. That’s when the “decisions made for us but without us” debate starts. They plan from a privilege position, where the barriers I face simply aren’t part of their experience, but I’m a fully present and capable disabled person, and, as colleagues and friends, I should have been spoken with. I wasn’t. The decision was already made.

Why not go to the hall? Hannah suggested it, as the busy, packed church would make her feel overwhelmed, but the hall is livestreaming the service. I might as well watch from home. I want to be in the church, Sue’s and my spiritual home, honouring her lived ministry, but if I’m not there, the physicality of the journey seems pointless for an act of watching a link I can access comfortably at home. Honouring Sue online one way or another.

It’s a catch-22 situation. If I go, the journey impacts me physically, places me somewhere inaccessible and keeps me an obstacle, or the journey impacts me and I watch via an online link. If I stay home, I look problematic, maybe petty over seating, or unwilling to show up for Sue. Me, the future priest who didn’t comply or support.

I’ve written about independence and autonomy, presence and participation, equality and equity, accessibility and usability, and ableism in church. I cannot advocate and then permit quiet acceptance when it happens to me. This is her funeral. It’s not and shouldn’t be about me, I get that, but the problem remains. I want to honour her and keep my dignity intact without facing imposed limitations.

I think the best option is to take a role in the hall, welcoming those in the overflow space. It justifies the journey’s physicality, is on my terms and not imposed, shows disability equity in church life and leadership, and lets me honour Sue in a dignified and right way.

Privilege: The Invisible Barrier

2026-07-10T01:30:00.000+01:00

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.

When I was younger, my consultant told me I was going against predicted outcomes. They couldn’t understand how I was still managing certain tasks. I laughed and said I “Martyn the shit out of it,” because that was how I coped. I pushed through, adapted, found ways around things. All I was doing was creating my own opportunities in an inaccessible world that wasn’t built for me. I made it my burden to adapt. I see how wrong that is now.

People aren’t usually malicious or ableist. They simply don’t see the barriers because they’ve never had to. That’s privilege. It’s the ability to move through the world without thinking about disabilities, accessibility or usability, presence or participation, pain, fatigue, whether a doorway is wide enough for a wheelchair, whether a step is too steep, explaining why you’re not the obstacle, and how privilege decides these things. Some people lean in. Some step back. Some never see the problem at all.

If this happened to another group, people would be upset. If someone was refused entry to a shop because of their race, sexuality, or gender, people would call it discrimination. Yet disabled people are left outside shops every day like a dog waiting for its owner because the entrance is inaccessible, and no one notices. Not out of cruelty. Out of comfortable privilege and ignorance.

A few weeks back I mentioned an incident at Arty’s school and how a teacher acted towards me. The privilege and ableism were blatant. I also mentioned how my ramp blocked the communion table one Sunday. The warden didn’t place it out at first. He thought I could lead on the ground level. He wasn’t malicious. He simply didn’t understand the barriers either I or others faced. The difference between equality and equity. People don’t see what doesn’t affect them.

That ramp, which should be a celebration of my independence, participation, and equity, has become something that regularly upsets me. Except Hannah, no one knows. They don’t see the problem. It’s large, chunky, and “gets in the way.” So it’s easier to remove it. Despite the fact that removing it means removing me.

Even today, when writing this, I have experienced several moments. I queued at an accessible checkout, was next in line, but the assistant served five able-bodied customers first before giving me a “Sorry about that, buddy.” Buddy always makes everything sound patronising. He didn’t think it was a problem that I waited while those behind me got served.

I had to wait for an Uber Eats driver to move his bike that he’d parked diagonally across the pavement that only able-bodied people could walk around. He didn’t bat an eyelid when he saw me waiting. As if I often sit next to bikes for the sheer fun of it.

Then someone at the train station, who should be working as part of the accessible team, wasn’t sure whether I was allowed to get off at an earlier stop than what my ticket had. I wanted to shout “Are able-bodied people allowed?”

None of this is malicious. They just don’t see the problem. People can be really naive. I often hear, “Can you not go up and down steps?” They look at the chair and see a “wheelchair,” not the person in it or the limitations behind it. All wheelchairs are the same in their eyes. They’ve seen manual chairs tilted and angled around barriers and assume all chairs can do that. Like this is my problem, not their barrier. Disabled people are not all the same. If racial groups were discussed as looking “all the same,” we’d recognise that as prejudice. Yet when it happens to disabled people, no one reacts. That’s interpersonal ableism, and it’s everywhere.

When we interviewed people as part of our accessibility challenge, every able-bodied person said they never saw the barriers we face. They never thought about it. They never needed to. That’s privilege, cloaking structural ableism built quietly into the world around us.

Back when we had problems with “Simon,” issues with him were dismissed because he was “a really decent person.” I’m sure they are, for you. Privilege means you can experience someone’s kindness while never seeing the harm they cause to others. For me, they were excusing discrimination. They didn’t even realise it. That’s how institutional harm works. I was, of course, being “problematic” for challenging him.

Privilege isn’t always intentional or cruel. It’s ignorance wrapped in comfort. People defend racism, sexism, homophobia, and transphobia. Fight for justice. Yet disability sits quietly in the corner or outside a shop, waiting for someone to notice.

It needs to change. Disability should be part of the same equality conversations about dignity and human rights. People need to see the barriers that have always been there and let privilege become awareness and action.

Until then, I’ll keep shining a light where I can, advocating, writing, and being me.

Disability and Relationships

2026-07-08T07:37:05.908+01:00

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

Living with a degenerative disability like FSHD means you learn painfully about relationships. You learn them through loss, silence, the way people look at you, and the way others look away when your body changes faster than your relationships can keep up.

I've lost a lot of friends and family because of my health. I get it. It’s hard watching someone you care about deteriorate. Some friendships faded quietly. Others snapped under the strain. A few stayed, but the gaps between seeing them grew longer, and in those gaps I changed. When we do meet, I see the sadness in their faces. They try to hide it. I try to ignore it. We both fail a little.

This is true about my brother. We never had the best relationship. After Mum died, it was really only Dad keeping us together, but when Dad died it stopped. Nevertheless, my health has impacted that relationship. He struggled when I first got sick at thirteen and it never really changed from then. Why wouldn’t you when you were told your younger brother might die soon. There’s more to it though. Over the years, we saw each other less and less, but comments about my health and the progression followed. It was hard for him.

Friends have struggled too. When I first started blogging, people at a blogging event commented that they didn’t realise how disabled I actually was, which led to me writing about my Muscular Dystrophy for the first time. Others have voiced the same when they see me after a long period. One friend, who now lives in Norfolk, said recently that every time he comes back down it’s a shock to see how much I have deteriorated. I saw it that day in his face before he said it. He looked at me, grimaced, and then quickly smiled and acted normally. I see that a lot.

My family is different. Hannah and the teens accept me fully. They see the reality of my health every day, still treat me as me, and help as young carers. Hannah dated me having read this blog. She prepared her two, although seeing is believing. At the start, they naturally stared and watched, and apart from Midge thinking I was having a “seizure” (I was sitting up in bed), they adapted. Hannah knew my health fully and still married me six years later anyway. It upsets her, but my health isn’t me.

Both boys struggled when they were little and strangers stared, but that came from a protective love stance. James sometimes struggles with my deterioration now, but mostly when a bigger one happens, but that’s understandable. Otherwise, he doesn't change his behavior. Midge struggled inviting friends over when she was younger in case they made fun of her or me, but doesn’t care anymore. All four have adjusted well. They always do. Just as I change, they change too.

My church friends are a mix. The close ones love me as I am. I’m just me. The older generation carry pity in their eyes, words, and actions. I dislike it, but I smile through it. They are of a generation that didn’t embrace disability like we do now. Church culture has also changed. More disabled people attend and feel welcome, which I’m grateful for.

Strangers are predictable. They stare, judge, make ablest jokes believing they’re being funny, and pull faces that tell you exactly what they are thinking. I used to care. I don’t now. The older I get, the less it bothers me. I have become accustomed. I fight when I have to. I shine a light when it’s needed. What others think is not at the top of my thoughts.

Online friends add another layer. Take World FSHD Day. People on Facebook celebrated my daughter passing her driving test, a date night with my wife, and anything that fits into a happy world. They don’t engage with the FSHD posts. Disability makes people uncomfortable. They want the good, happy posts. They really don’t want a reality check.

I’m happy with my life, but my world is affected by my disability. It shapes my days, nights, choices, independence, pain, and future. It shapes how people respond or avoid me. I’m still me. The person who partially cooks, writes, teaches, ministers, laughs, annoys, reflects, and tries. I’m still the person who parents, loves, advocates, carries on, gets up every morning, and chooses to live a life that is mine, not defined by what my body cannot do. Even if its slightly lonely at times, I’m still here, present, and participating. Living a life that is worth writing about.

Ministry of Sound Classical at Rochester Castle

2026-07-05T01:30:00.000+01:00

There are nights that stay with you. Friday night was one of them. Hannah and I went to the Ministry of Sound Classical at Rochester Castle Grounds, and it was everything we hoped it would be. The setting, the atmosphere, the orchestra, the crowd, the energy.

We arrived around 5:15pm. The entrance was not designed with disabled access in mind. Cobblestones, uneven paths, and a queue system that made no sense for anyone using a powerchair. We edged forward around the queue until we found a security guard who understood the situation straight away. He guided us to the ticket check without fuss. It was a relief to be seen and supported.

Hannah had her bumbag searched, which was quick and easy. Then a woman came over to me. She was friendly and warm as she checked the side bag on my chair. I told her I had medication in there and nothing else. She searched it thoroughly, then paused. She asked if she had needles and then insulin. I said no. I don’t use them. She looked confused and asked what she was feeling. I had no idea. I was just as confused as she was. She reached in deep and pulled out a tiny figurine. It was a little Jesus. A Christmas present from Midge. I had forgotten it was there. She stared at it, then started laughing stating "It's a little Jesus." I said that everyone needs a little Jesus. She agreed, still laughing as she checked the bag on the back of my chair.

Hannah and I tried hiding a large squash bottle full of water in there. These events have strict rules. Through the check point all bottles were being removed so no alcohol or other substances were being snuck in. To be honest, we shouldn't have done it, but in these situations security often ignore the bag on the back. They don't like inspecting a chair. I think disabilities still make some people uncomfortable. This wasn’t the case. This guard wanted to look. She saw it, leaned in close, and whispered that she would leave it. She said she shouldn't, but she didn’t mind. It felt like the little Jesus had helped, as she was still smiling and laughing. I also think she has some unique empathy and insight.

She guided us through a side panel away from the inaccessible queue and told us about her wheelchair-bound son. When people get what this life is like, they allow more than others might. She waved us off and wished us a brilliant night. We then found a spot a few metres to the right of the stage and settled in.

The grassy areas by the castle ground walls were already covered by people. As was the grass directly in front of the castle. There was a wheelchair platform but we ignored it. They allow the chair owner up, but not their carers, partners, friends or family. Hannah and I wanted to be together. Where is the fun when you're not with the people you have fun with.

The build-up was brilliant. Seb Fontaine, Tall Paul, and Kings of Tomorrow were all playing. The crowd grew steadily and the area where we were started getting busier. The atmosphere was relaxed, friendly, and full of anticipation.

When the Ministry of Sound Classical orchestra began, the whole place shifted. The stage lit up and the sound deepened. Hearing iconic dance tracks played by a full orchestra was incredible. The pace, the arrangements, the way the strings lifted familiar melodies, and the way the percussion carried the rhythm. It was dance music with a heartbeat.

They played a medley that covered so many eras. Faithless. Moloko. Alice Deejay. Fatboy Slim. The Chemical Brothers. Robert Miles. Rihanna. Tracks that shaped nights out, long drives, friendships, and memories. Hannah was jumping around, dancing, laughing, and loving every second. I was dancing and rocking in my powerchair, moving with the music, and enjoying the freedom of being part of something full of life.

The show finished at 10pm. Hannah said it was perfect timing for our age group who want the fun but still want an early night. She was right. We left with that warm feeling you get when a night has been exactly what you needed.

It was more than a concert. It was a reminder of how music connects people, how places hold stories, and how nights like this become good memories. I am grateful we were there. It felt like a celebration of the dance music I grew up with, shared with thousands, and held within the walls of a place that has seen centuries of life and change.

P.s. The answer is Yes, we are sore and exhausted, but it was still an epic evening.

Midge Passed Her Driving Test

2026-07-01T01:30:00.000+01:00

When your child reaches a milestone, you feel it in a way that sits somewhere between pride, relief, and joy. Last week my amazing daughter, Midge passed her driving test. I knew she would. She was ready long before the certificate arrived, yet hearing her say the words still felt like a moment worth holding.

She was keen from the start. The day she turned sixteen she wanted her provisional licence sorted, and once she turned seventeen we took her out for those first gentle lessons. I did the same with Hannah when she learned. There is no need to pay for early sessions when the basics are steering and pedal control. We found empty car parks and drove slow circles while she learned how the wheel moves, how the accelerator responds, and how the brake feels under her foot. It was simple, steady learning, and she took to it quickly.

Learning in an automatic made sense. Most families now choose automatic for new drivers, and the shift toward electric cars has changed the landscape completely. Electric motors deliver instant power and work efficiently across a wide speed range, which removes the need for multiple gears. There’s no clutch pedal and no manual gearbox. You press the accelerator to go and ease off to slow down, helped by regenerative braking. As I like to say, it’s just a giant go-kart. Passing your test in an automatic gives you an automatic-only licence, and with electric cars becoming the standard, this is the direction driving is heading. Midge won’t need to adjust later. She will be ready for whatever the future brings.

Once she felt comfortable behind the wheel, we booked her lessons with the same instructor Hannah had. It was a perfect match. She loved every session, came home smiling, confident, and excited for the next one, and was a natural driver. Some people need time to settle into the rhythm of the road. She found it straight away.

The theory test was the challenge. She struggled with the multiple-choice section. The hazard perception part was fine, but the questions caught her out. To pass the UK theory test you need at least forty-three out of fifty on the multiple-choice questions and forty-four out of seventy-five on hazard perception. At home she scored forty-two or forty-three. In the test centre she scored forty or forty-two. Each attempt was close, yet not quite enough. Month after month she would come home disappointed. She was never upset. She always kept going.

The questions come from fourteen categories that cover everything from alertness and attitude to motorway rules, vulnerable road users, vehicle loading, and emergency situations. It’s a wide range of knowledge, and the random mix meant she could be caught out by caravans one week and trailers or tires the next. We realised she needed to raise her practice scores before trying again. It was costing too much to keep doing these tests when she wasn’t reaching a higher level at home. She worked hard. Studied hard. All until she reached forty-six and forty-seven at home, and once she did, she passed the real thing, not long after her eighteenth birthday.

She booked her practical test straight away. The national waiting time is long. The current average is over twenty-two weeks, which is roughly five months. Her date was set for September, despite being test ready for almost a year. Thankfully someone cancelled and she was offered an earlier slot. She was nervous the night before. I was not. She was born to drive.

Last Wednesday I was at the church coffee morning when I saw a missed call. The signal there is terrible, so I stepped outside and rang her back. She answered and told me she passed. It was one of those moments that stays with you. She worked hard, pushed through the theory challenges, and proved her ability on the road.

[Image 2. This photo captures Midge proudly holding her official DVSA Practical Driving Test Pass Certificate — the moment she became a licensed driver. Her Van Gogh T‑shirt adds a touch of personality, while the background of her home reflects the warmth and pride of the day. It’s a snapshot of achievement, independence, and joy]

She’s an incredible daughter. She’s kind, determined, thoughtful, and stronger than she realises. Watching her grow into herself has been one of the quiet joys of my life. I love her deeply and I am proud of her in every possible way.

Now we need to buy her a car. I promised to cover a large part of it and I will. A second-hand automatic will be perfect for her first few years. She can then find a job to cover the insurance and start her adventures. She has earned every mile ahead of her.

Presence vs Participation

2026-06-28T01:30:00.000+01:00

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.

I love cooking. I’m a feeder, much to Hannah’s annoyance. I went to university knowing how to make a basic pasta bake from a sauce jar and not much else. Mum had always cooked for me. Marriage forced me to learn more, although living in the shadow of a professional chef / father in law meant I never quite measured up.

Everything changed when I became a single dad and had to learn to cook properly. I bought a basic cookbook and worked through each recipe. Six years later I was confident, creative, and teaching Will through our My Little Chef series and home ed lessons. When Hannah and I started dating, she loved my cooking, but didn't eat anything spicy and was suspicious of everything, mostly due to he gluten and dairy intolerances. Cooking became part of how I cared for the people I loved. My health changed that.

When I became a powerchair user, we lowered the kitchen surface so I could keep cooking. Hannah and the kids hated cooking. I loved it. We all enjoyed the food I made. It was independence, creativity, and joy.

Recently, I’ve gone from independently cooking to being present in the process. I still prep ingredients and monitor the food. We had spaghetti bolognese, including a homemade sauce, last night by doing exactly that. Once everything was ready, my part was over. I couldn't open tins, lift saucepans, drain pasta, season as I go, hold a handle and stir at the same time, or reach over heat without risking harm. Hannah or the kids do it.

Some may argue that this is still participation. I understand why. I’m involved, contributing, and guiding the process, but participation isn’t simply being part of something. It’s equally sharing the activity, safely and independently, with those who are also participating. My role has shifted. I’m in the kitchen, but I’m not cooking. I’m present, not participating in the task.

Sometimes my presence becomes troublesome. My chair gets in the way. I move to make space. The other day I even rolled into the hallway so they could work in the small space, diminishing my presence further. I was there, but not part of the process like I was before.

This happens a lot. My graduate theology modules were in person in London, which I physically couldn’t do. A hybrid option was offered. I logged in, listened, and took notes. Yet the group discussions happened in the room. I was asked for my thoughts at the end of the lesson, but most of the time I was the face on a laptop. I was present. I wasn’t participating. My peers were shaping the conversation. I wasn’t.

It happened again in Wrexham. I wanted to watch the match in the Turf, the pub from Welcome to Wrexham. We arrived three hours before the match to avoid crowds. Wayne, the owner, stopped us from entering. He said I was welcome, but I wouldn’t be “comfortable” inside. It was standing room only. Hannah, Will, and Arty could go in. I could sit outside. I wanted the football atmosphere, but was isolated. We found a community hub down the road. It wasn’t the same, but at least I was participating in the shared atmosphere.

Disabled people understand this. We are welcomed, invited, included, and counted with good intentions, but the structures, layouts, expectations, and habits around us decide whether we participate or simply exist on the edges. Presence is easy. Participation requires thought, adaptation, and understanding.

Presence says you can be here, in this room, visible, but not much else. Participation says you can belong here, contribute, and have personal agency.

This difference appears everywhere. Churches, schools, workplaces, community groups, and social spaces often pride themselves on being inclusive. Yet the environment still assumes able bodied norms. Disabled people navigate around furniture, inaccessible layouts, accessibility issues, rigid processes, and unspoken expectations. We are present, but our participation depends on workarounds, explanations, or someone bridging the gaps.

Presence isn’t participation. Someone being included doesn’t mean they have equity within equality. This misunderstanding forces disabled people to face these barriers. Tokenism isn’t representation. Many don’t understand that.

Participation requires more. It asks people to see barriers, communities to adapt rather than disabled people adjusting themselves to fit, and institutions to move beyond visibility and towards genuine inclusion.

I don’t need to fight for presence. Most disabled people are already here. We deserve the right to participate fully, safely, and with dignity, have spaces shaped with us, not around us, and for everyone to understand that inclusion is not about being in the room. It’s about being able to take our place within it.

Presence is the invitation. Participation is the belonging. It's time we participate more.

Finally Understanding Myself: My ASD Assessment and Diagnosis

2026-06-24T01:30:00.000+01:00

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.

On Friday I had my two‑hour ASD assessment. Hannah and I sat online while the assessor discussed my childhood, adulthood, school life, friendships, communication, sensory needs, routines, and emotional responses, capturing everything I’ve written about for years.

We started with communication, because it’s always been the hardest part of being me. I either say too little and confuse people or say too much and overwhelm them. I accidentally interrupt because the thought arrives fully formed and I misjudge the gap, I spend hours editing and shortening text, and my friends either carry on regardless or wait for me to reach my point. Hannah even stopped me in the assessment. The irony was strangely reassuring.

We talked about childhood. How I struggled following the adults and child hierarchy. I was raised that if I didn’t know something I stayed quiet. If I did know, I spoke with confidence. Mum created guides and systems to help me function, cut clothing labels out, bought soft jumpers instead of blazers, washed my pound puppy and favourite bedding while I was at school so I wouldn’t notice, and bought a book called But Martin! about an alien trying to fit into a human school but doing everything differently. It wasn’t just a story. It was a mirror. Looking back, she did so much that I now recognise as her way of supporting my unknown, undiagnosed, and unmanaged ASD as I navigated the world.

[Image 2. The image shows the cover of But Martin!, a children’s story about a little green alien who tries to fit into a human school but experiences everything differently from the other children. The book was written to help children understand and accept difference. For me, it became a mirror—my mum used it to quietly teach me how to recognise and navigate my own differences long before I understood my autism]

We talked about sensory needs. Shoes. Textures. The way I chewed my sleeves as a child and still chew items now. How hair washing felt like needles on my scalp and how showers still overwhelm me. We talked about food too. I eat everything but I’m fussy, separating foods on my plate, avoiding ketchup touching vegetables, and refusing crisp sandwiches because the textures don’t mix.

We talked about emotions. I can recognise crying, smiling, anger, and boredom, but not always the cause, which Hannah often explains. I described emotions physically, like how anxiety, overwhelm, and sadness sit in my chest and happiness sits on my face. Hannah said afterwards that this was a common autistic trait. I never knew that.

We talked about routines. Order. Predictability. The items I still have from childhood, like my pound puppy that still sleeps with me. The writing rules the school created. The extra time given for exams. The stimming I do with my hands that Hannah notices and I don’t.

By the end of the assessment I received the diagnosis, surprising no one except the version of me that believed a misdiagnosis for over a decade.

The biggest shift is not the label. It’s the clarity. I no longer have a diagnosis of Dependent Personality Disorder with emotionally unstable traits. It makes sense looking back, as 2010–2012 were some of my worst years. I was grieving, drinking, overwhelmed, struggling, and burnt out. The traits they saw were crisis responses, not personality. The years before and after tell the real story. My childhood screamed autism. My life after thirty stabilised. I rebuilt. Masked. The personality disorder signs didn’t reappear. It was always autism.

I’ve carried the weight of being “difficult” through childhood, school, friendships, work, and even into the ordination process. People often misread me seeking clarity for attitude, overwhelm, argument, or manipulation, like the incident with the bishop. I raised discrimination concerns and the risks created by pausing the process because of my degenerative condition. I was explaining a structural problem, evidenced by the Fearfully and Wonderfully Made report, to avoid institutional harm. It was taken as confrontation. She focused on the personality disorder diagnosis and saw instability instead of a potential misdiagnosis, unlike my DDO and ADDO. I was framed as difficult when I was trying to protect myself from a historically ableist system. She even said that all she heard was “ordain me now because I am disabled.” I was communicating for clarity. I appreciate she doesn’t have the mental health training to approach this well, but it should have been handled differently. Instead she embodied the examples raised in the report and mischaracterised me because the wrong story dominating my life.

I learned to recognise the facial expressions that means “here we go again,” to shrink myself to avoid being misunderstood, or to apologise for things I didn’t do or couldn’t help. It’s something I still do. I need to do it with the bishop to move on and reconcile the situation.

This diagnosis names me, explains my life, connects to my children, and gives me the language for the things I’ve written about for over a decade. The misdiagnosis shaped how people responded to me and how I saw myself. I spent years fixing something that wasn’t broken. I wasn’t unstable. I was autistic. I finally have the language to explain it and see myself clearly.

World FSHD Day: The Day After

2026-06-22T01:30:00.000+01:00

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.

Reading other people’s reflections mattered. The FSHD Society shared stories from across the world, each one different but all speaking with the same honesty. They talked about identity, refusing to be defined by the disease, strength, humour, and the determination to keep going. Others shared the emotional impact on families. The insecurity, grief, frustration, anger, purpose, responsibility, and the shift from passion to adaptation. Parents advocated for their children. Children advocated for their parents.

Every story was different, yet familiar. I recognised myself in their words, photos, and life, even when experiences weren't identical. We share the refusal to let FSHD become the whole story, the resilience without pretending it's easy, the way acceptance becomes strength, and how daily life turns into a series of adaptations. Within each story the same emotional, relational, and physical toll, the willingness to speak openly about vulnerability, the rejection of pity in favour of dignity, and the belief that awareness is a lifeline.

Here are the Voices of FSHD that the Society shared.

[Image 2. Esmeralda’s Story. She one of three children out of seven in her family. She reflects on how, being a sporty person, that FSHD has turned hobby to responsibility]

[Image 3. Valerie’s Story. She reflects how every day pains were symptoms. How it was a journey to acceptance and fighting it]

[Image 4. Ben's Story. Reflects and inspires, sharing that FSHD doesn't define who we are or what we can achieve]

[Image 5. Andrew’s Story. He also inspires like Ben commenting not to give up]

[Image 6. Kathy's Story. She reflects as a wife to a husband with FSHD. How FSHD impacts every aspect of life]

[Image 7. Tracy's story. She reflects on wasting time on insecurities and not embracing life as great. Live for tomorrow]

[Image 8. Erin's Story. She reflects as a mother to her FSHD child and how it affects families]

[Image 9. Colleen’s Story. She reflects on her life as a whole from work, family, and FSHD. Remembering she's not alone]

These stories reminded me that even though FSHD is rare, the experience is shared.

There were moments of kindness too. A friend and his wife joined in with an orange‑segment selfie.

[Image 10. T and K inside their house facing the camera. Its a hot day and T is not wearing a top. In both of their mouths are orange segments for the selfie spread on World FSHD Day]

James’ girlfriend, T, did as well. It’s nice that the next generation cares about awareness.

[Image 11. T is indoors, she is wearing a black top. She faces the camera posing with a orange segment for her orange slices selfie]

Three friends messaged to say I am an inspiration. It was lovely to hear. Awareness is the main point, but I do hope that my presence brings awareness. Others shared my posts, helping it spread a little further. I really appreciated that.

Rochester Cathedral also helped spread awareness by lighting their spire orange. Hannah contacted them as they periodically change the LED lighting system to celebrate occasions and commemorate causes. That meant more than I expected. A place tied to my faith, calling, and disability, illuminated together.


[Image 12. . Hannah and I are standing together at night with Rochester Cathedral glowing orange behind you. The full building and spire are illuminated, marking World FSHD Day.]

[Image 13. I am positioned in the road at night, facing the cathedral as it glows orange for World FSHD Day. The full building and spire are not visible ahead oof ms jts just the orangespire with houses around me]

[Image 14. I am facing away from the camera, looking up at the cathedral’s spire glowing orange in the dark. The focus is on the illuminated spire rather than the whole building.]

There is a harder side to all of this. Even though I'm in the top severity, I saw people who are further along than me. Some are bed‑bound, have lost arm or hand control, or can no longer keep their heads upright. Some had facial masking and myopathic facies, where facial muscles have wasted and weakened and they’ve lost expressions, or lagophthalmos, the inability to fully close the eyelids, and oral incompetence, where the mouth stays open.

I’m not there yet, but I recognise parts. I already sleep with my mouth open. I slur more now and struggle with certain letters. My resting face looks grumpy even when I am not. I’m putting more effort into smiling. I can see the degeneration beginning. The arms and legs don’t frighten me. Aids and support exists. The face and speech I'm not ready for. Thankfully, I think I'm still a good decade away from that, so I’m choosing to enjoy what I have now.

These individuals still show me that a life can be led. A story can still be told. Adventures still happen. Support is still there. Adjustments, inventions, technology, and new ways to help are constantly evolving.

The current drug trials show this.

[Image 15. An infographic explaining the current approaches in FSHD drug trials. It shows three categories: therapies that suppress or silence DUX4, treatments that support muscle growth and strength, and drugs that reduce inflammation in FSHD muscles. The graphic highlights that several organisations are working on these approaches and that some drugs are already in clinical trials.]

Some therapies try blocking DUX4, the toxic FSHD gene, by silencing or reducing its muscle activity. Others support muscle growth, helping weakened muscles cope better with the damage. A third group tries restoring immune balance by calming the inflammation within the muscles. More than twenty organisations are working on these ideas, with several drugs already in clinical trials. None of them are cures yet. There is still a lot to learn but for the first time the science is progressing, not just dealing with symptoms. That brings hope.

The science still depends on awareness. Awareness leads to funding, and funding pushes the science forward. That's where yesterday becomes harder. While those like me share our experience and voices, the conversations around it often fall silent. When I share FSHD posts the engagement drops, making support quieter. That contrast is difficult.

People want a happy news feed. Pictures of birthdays, good news, photogenic landscapes, or achievements. When I post about FSHD, even on World FSHD Day, the posts struggle.

People don’t want to see this side. It makes them uncomfortable. Without likes and comments, the algorithm swallows the post and awareness doesn’t spread. I see it in real life too. Friends and family have distanced. My life hurts too much when they see FSHD progressing. It’s easier for them. The problem is that the longer they stay away, the bigger the change. It hurts, even if i understand why they pull back.

Yesterday, people with FSHD came together, united, and raised awareness about the hardest parts of our lives so research improves and futures change. Without that awareness, our lives progress in silence.

This is why every share, selfie, message, and moment meant so much yesterday. It shows that even in something so rare none of us are truly alone. Bring on World FSHD Day 2027.


[Image 16. A orange square graphic for World FSHD Day 2026]

World FSHD Day: A 2026 Reflection

2026-06-20T01:30:00.000+01:00

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.

Back then, I understood muscular dystrophy in simpler terms: weakening muscles, pain, and a slow decline that no one could quite predict. The science was broad and vague. FSHD was just one MD strand that affected muscle groups, led to wheelchair use and crippling disability, and followed a personal map. After twenty years, prognosis felt like a list of possibilities where no clear pattern emerged to validate worst-case scenarios. I lived in a tension between frightening predictions and determination to carry on regardless.

The picture is sharper now, but more complex. FSHD is divided into types and understood through greater genetic understanding. With new research, rediagnosis, and advancements, we now understand why my "expected path" never matched. It's gone from rough guesses to detailed genetic explanations, even if treatment remains impossible. The progress matters. It gives future generations, including my boys, a clearer, better, and hopefully more effective future.

What is FSH Muscular Dystrophy?

FSHD affects around 1 in 8,000 people worldwide and roughly 2,500 to 3,000 people in the UK have been diagnosed with it. Most people have never heard of facioscapulohumeral muscular dystrophy until someone they know is diagnosed. People search for answers, wanting to know what FSHD is, its symptoms, progression, and what life with it feels like. It's why I write. Awareness matters.

FSHD is a genetic muscular dystrophy that weakens the face, shoulders and upper arms, then moves uniquely through the body per person. It has two types. FSHD1 is when a section of DNA is shorter than it should be, allowing the damaging protein called DUX4 to switch on. FSHD2, which I have, is when a gene that should keep DUX4 switched off stops doing its job. It's less common, more unpredictable, and severe because the faulty switch affects more areas, giving DUX4 more opportunities to activate and cause damage.

My progression started in early childhood. I was bad at races, couldn’t whistle, and struggled with calisthenics, like push-ups. By thirteen I developed a foot drop and started falling. I used a walking stick in my twenties, a wheelchair occasionally in my early thirties, and became a permanent powerchair user at thirty‑eight. By forty I couldn’t stand independently unless lifted, but my ankles or legs give way quickly. My core has weakened, my neck has slouched for years, and my face strength and speech have deteriorated. FSHD even takes your smile, which I'm finding harder to do now.

Over the last year my core began to fail. I wobble when I sit, collapse if unsupported, and struggle to stay upright. Eating is difficult because my body folds in on itself. The fear of falling has returned, the same fear I had when my legs would collapse, leaving me vulnerable again during transfers. Pain has increased. Weakened muscles pull bones and joints out of alignment. Deep stabilising muscles deteriorate. Everything strains to compensate. Every muscle and joint painfully pulses, day and night.

Despite support from my wife, family, and friends, FSHD feels isolating in a country of 69 million when only 0.003% share the deterioration, progression, and pain. I have Facebook friends across the UK but had never met anyone with FSHD in person until our church Christmas fair last year. Emma, a PTA member from our local school, recognised and asked if I had FSHD. Her dad had severe symptoms, her sister moderate, and Emma mild. She saw the posture, movements, facial weakness, and “FSHD look” from living with her dad. Meeting someone locally with FSHD was incredible, especially considering the odds against it. Her family shows the breadth and variety of this condition and reflects my experience.

This is why awareness matters. Not for pity or inspiration, but understanding, recognition, and making a rare disease less isolating. It helps those who search “FSHD symptoms,” “FSHD progression,” “FSHD1 vs FSHD2,” “FSHD life expectancy,” and “living with FSHD,” hoping for clarity in a world that rarely offers it.

Prognoses around FSHD are scary, including my own, but after thirty years, the biggest change isn't my degeneration or the shifts in diagnosis, science, and future progression. It's in me. I no longer measure my life against missed death dates, worst case scenarios, or ever-changing markers. My story sits within a wider story of disability, faith, justice, and belonging that I refuse to step out of. World FSHD Day isn't about presenting a life worth pitying so support is offered. It's helping people make a connection with the person, explore the world we live, and understand the reality behind the diagnosis.

Hopefully, this reflection helps understand the condition and me better.

FSHD’s cruellest feature is losing your smile. Each year, orange‑segment selfies are shared to raise awareness, using the colour of Muscular Dystrophy and the part of the disease that hurts the most. As my face changes and my resting expression looks more grumpy, this small act has become even more important. Today my family are joining me so every smile still shines through, and if you want to join in, you can.

[Image 2. I'm indoors, in front of a cabinet, wearing a dark green top holding a segment of orange in front of my mouth. Matching the muscular dystrophy colour orange while representing the lost smile the condition causes.]

[Image 3. Hannah is indoors, wearing pink glasses and a black top as she's holding a segment of orange in front of her mouth. Matching the muscular dystrophy colour orange while representing the lost smile the condition causes.]

[Image 4. Midge is indoors, wearing a black top, in the background is a pink cat picture. Leigh is holding a segment of orange in front of her mouth. Matching the muscular dystrophy colour orange while representing the lost smile the condition causes.]

[Image 5. Will is at college, wearing a green top and blue lanyard. He is holding a segment of orange in front of his mouth. Matching the muscular dystrophy colour orange while representing the lost smile the condition causes]

[Image 6. Arty is indoors in a green room in front of brown doors. He has a segment of orange in his mouth. Matching the muscular dystrophy colour orange while representing the lost smile the condition causes.]

[Image 7. James is outside the house wearing a white top. He is holding a segment of orange in front of his mouth. Matching the muscular dystrophy colour orange while representing the lost smile the condition causes.]

The FSHD Society are also inviting people living with facioscapulohumeral muscular dystrophy to share their stories through #VoicesofFSHD, giving space to the lived experience behind the diagnosis and helping each voice raise visibility, strengthen advocacy, and connect our global community. This post is my voice. This is me.

A Sunday That Felt Like Coming Home

2026-06-19T01:30:00.000+01:00

Some Sundays at church are work. Some are worship. This week was worship.

It’s not always easy to enjoy church when you serve there. There is always something to do, someone to speak to, and a task waiting. The Sunday before was like that. I had much needed work conversations before the service. The service itself was fine, but I wasn't uplifted. The sung worship was good and the band did well. The lead made me laugh with a story about her competitive streak when naming her childhood bear, which suited our teddy bears picnic theme.

Then I did the talk. It was the first week of the second section of our sermon series. The series started too quickly and has been difficult in places, so the congregation didn’t always understand what was shared. I felt pressure to deliver something clear. It seemed to go well and people said positive things afterwards. That was encouraging, although it was still ministry and work.

The service ended and more conversations followed. By the time I finished, I needed to leave to catch my train, which as a wheelchair user must be booked for assistance. I was disappointed because there was a picnic after church. I saw the small group eating and laughing, yet I couldn’t join them. A friend messaged later to check if I was alright as I didn’t seem my usual peppy self.

I hated that, but she was right. It was a week where I didn’t feel refreshed or renewed by church. My service was needed, but I felt drained. A few sleepless nights hadn’t helped. I was exhausted and needed an up that didn’t happen. It happens. It is part of the calling. Smile and serve. It was one of those weeks where I needed something for myself and didn’t find it on Sunday. Thankfully, I connect in other ways. I sang with my headphones on while I rolled to the station, listened to worship music, read scripture, and prayed at home, and joined my weekday study group later that week. Importantly, I knew that one week doesn’t define every week.

This Sunday proved that. I wasn’t serving. It was our more formal communion service where we don’t tend to get many families in. It’s not a problem. I love the sacraments. The sung worship was perfect. It reached the places it needed to reach. I closed my eyes, sang and worshipped. I really felt the connection. The talk was good. It continued the series and built on my talk from the week before. It felt easier to follow. The series was back on track and despite knowing the content, it’s delivery reached me in ways I hadn’t expected.

There was more. We had fifty two adults and children, not our usual thirty two regular and consistent-inconsistent members. The church felt vibrant. My children have grown into the youth group, where there's now seventeen young people aged twelve to eighteen. The children’s group has been running low on numbers with one family’s three children and two others who come occasionally. We normally have a small amount of children and youth inconsistently attending depending on the week. Being a communion Sunday, I expected fewer families, but more attended than expected.

We had teens, preteens, children, and toddlers. Eight children and three youth. It felt like a lively all age church again. The children were brilliant. They did their craft, which tied in with the series, and came up and showed the church what they had created. It made me smile and remember when my own children did that.

The fellowship afterwards was the best part. I’ve been at my church for sixteen years and for a long time I've felt like the odd one out. There is a generation above and below me who are old enough to be siblings. In some cases those above are the parents of those below. I fit right in the middle. We also have the youth, children, and generation who could be my parents. My own age group has been missing for so long.

That has changed recently. A couple, who are the same age as Hannah and me, joined with children similar ages as ours. The friend who checked on me last week is one of them. Another couple have started coming who is a lifelong friend. She wanted a friendly church that wouldn’t judge her son for his needs but if the church accepts me, Hannah, and our children, then they can accept anyone. Another couple I have known for years have been attending more since October but inconsistently due to co-parenting arrangements. The final couple have been there a while but also serve, leaving little fellowship time. This Sunday everyone arrived, with their children, and filled the church.

It was the first time I have ever felt my generation were present. I was so happy. The service was wonderful. The church felt truly all age. I was surrounded by friends and my generation. It felt like a hopeful glimpse of a growing church, active, and alive church.

I know it is not perfect. There are problems, like any organisation, activity, and family, especially since losing our priest, Rev Sue, last month, but this Sunday was different, joyful, and felt like home.

Bring on this Sunday.

Stories That Were Never Asked

2026-06-18T01:30:00.000+01:00

My dad’s eighty‑sixth heavenly birthday was last Wednesday. I didn’t mark it. I didn’t post on Facebook, visit the crematorium, post here, or even tell the kids. The words never came. I spent the day and the days after remembering him quietly instead.

Dad died in 2022, ten years after we lost Mum. Time is strange. It doesn’t feel like four years have passed, despite so much happening. We got married. I began the ordination process. My health changed. Losing Mum still feels close, but looking at James shows how long it’s been. He was fifteen months old when she died. He is fifteen years old now. Life just moves on.

I thought I would forget them or that my memories would blur. That never happened. I just wish I had more time, built more memories, and learnt more about them.

Back in February, James and I went to Canterbury for his ASD assessment. He had been struggling for months and wanted one‑on‑one time. I was happy to give it. I went to university in Canterbury. It was full of fun. Studying, nights out, pubs, girls, adventures, trouble, and the places his mum and I spent time together when we started dating halfway through my first year, even though we met in Sixth‑form. I showed him everything and the stories flowed. At one point he said, “You have such good dad lore.” It made my day.

We also talked about Mum and Dad. He said they had good lore as well. I didn’t show it, but it hurt. There is so much about them that I will never know. Some things came out after they died, but most of their lives remain a mystery.

I just didn’t care enough to ask when they were alive.

I remember being in my mid‑twenties, sitting in their garden with Dad and my uncle. A plane flew overhead and Dad said, “That’s going to Amsterdam.” I challenged him, convinced he was talking nonsense. I mean, how could anyone know where a plane was travelling to unless you were on it? Mum also had a fear of flying and of being on boats and ferries. There was no way she would have done this.

So, I asked Mum. I stormed inside, repeated the conversation, and Mum confirmed it. She had been on a national ten‑pin bowling team and travelled to compete. I knew Mum bowled when she was younger, but I never knew this. Dad went to the loft and brought down her uniform, trophies, badges, and a box of photos. I was stunned. I was in my twenties and only just learning this. What else didn’t I know? They adopted my brother when Mum was thirty‑eight and Dad was forty‑one, and then me three years later. I knew they had a life before parenthood, like we all have, but I’d never heard about this. There were decades of their life before we arrived that I knew nothing about.

Years later, after Mum died but before Dad’s Alzheimer’s and dementia fully took hold, I asked why Mum stopped flying. He told me the return flight from Amsterdam was on an old, unstable plane. They were seated apart. Mum gripped her seat the whole way, terrified she would die without Dad beside her. It was a horrible thought, but it comforts me that she eventually died with him by her side.

I now know fragments of her bowling years, but so much is missing. I don’t know when she started, how long she played, who she played with, or why she stopped. It didn’t matter then. I thought I had time. After Mum died, I still didn’t ask enough. I was recovering from a breakdown, climbing a mental health mountain, adjusting to a personality disorder, potentially ASD, misdiagnoses, divorce, learning to parent alone, learning to co‑parent, building a home school style and environment, and staying afloat. By the time I cared, Dad’s memory had gone. Forty years of their life disappeared with it.

All the questions I wish I had asked is what consumes me on anniversaries or birthdays each year. I shouldn’t be surprised. I have had half of my life erased by my parents. That doesn’t make it any easier though.

It has made me think about my own life and the stories I leave behind. I don't want my children to be in this position with me.

This blog has always had three purposes.

1. To document my life as a parent, capturing everyday moments, challenges, and joys with the boys.

2. To share my thoughts and work through whatever life throws at me, whether that’s home schooling, parenting, disability, health, general topics, or Christian and church posts.

3. To record who I am so the boys, and now Midge and Arty too, have somewhere to come when I’m gone and they want to hear my voice again.

A time capsule of my life.

So I’m starting a new weekly series, "The Stories I Leave Behind." A space to share my life. Everything I can remember or know. Almost a thousand posts exist already on this blog, but there’s still so much I’ve never written. It’s time to fill in the gaps.