Inside Martyn's Thoughts

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.

Independence vs Autonomy

2026-06-16T01:00:00.000+01:00

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

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

What do disabled people mean by autonomy?

Autonomy is the ability to make informed decisions about your own life. It’s the right to decide what support you need, how you want to live, and what gives your life meaning. It’s not about proving your ability. It’s ownership over your life. It’s the freedom to choose, to say yes or no, to change your mind, and have your decisions respected because you’re a person with dignity, not a managable task, even when support is involved.

Our wet room was recently converted and it happened then. Occupational therapy has one viewpoint. Keep the client safe, even if it removes independence and autonomy. My health sits in a fine balance between doing too much or too little physicality and exercise. I maintain my ability through creating unique “Martyn‑specific” aids and ways of staying independent. These have worked and changed over thirty years, but for OT’s they’re “dangerous” because they’re not officially approved.

Transitions are a problem. When I’m not using custom‑made aids, Hannah lifts me. This isn’t great. I’m ten stone of deadweight that lacks the muscle strength to assist her, which weakens or risks injuring her back.

I understand the OT’s want to secure me, keep me safe, have me transition safely, and keep Hannah healthy. If she injured herself, my overall care would plummet.

Their solution is a hoist. I hate the idea because they look undignified, remove current independence, and increase muscle degeneration that I’m finely balancing through my custom aids.

I’ll need it one day, but not yet. Just like I knew I'd one day need my powerchair. Throughout this wet room conversion, the OT constantly pushed it, despite me repeatedly and respectfully saying no. She didn’t listen. She wanted my health secure at the cost of my independence, which removed my autonomy.

Saying no didn’t matter. I breached their safety guidelines. After months of consultations, meetings, and the two weeks fitting the wet room, it was repeatedly mentioned. I eventually had to say, “If you mention a hoist again, I’ll kick you out of my house. I’ve been clear and you’ve constantly ignored it.” That shouldn’t have been necessary.

My independence was being framed as “pride” and my maintaining “highest achievement,” but one I had to surrender. That wasn’t the case. This is where society misunderstands independence as a moral expectation you do alone rather than a personal preference on what you can choose.

Once you’re judged to have lost independence, autonomy often disappears. People stop listening and assume support means control. Real autonomy does the opposite. It recognises that everyone needs help through different moments in life and still gives the person dignity. It’s about having the right support at the right time, guided by the individual’s decisions, not managed for them.

Autonomy isn’t isolation. It’s relational. It sits within community, responsibility, and how our choices impact others. It’s not absolute freedom. It’s freedom within the expectation that decisions are informed, rational, and uncoerced. It’s the belief that vulnerability doesn’t remove your right to choose. It’s the principle that people should be treated as ends in themselves, not as means to an outcome. It’s the understanding that autonomy must be protected by safeguards, not overridden by them.

This is where autonomy overlaps with equality and equity. Equality gives everyone equal provision. Equity gives what is needed to have the same chance. Autonomy sits firmly with equity. It recognises individuality through the variety of support, tools, or adjustments to gives the same agency as everyone else.

It also links to accessibility and usability where autonomy assures practices are usable. You can offer support, but if it removes choice, control, or dignity, it isn’t usable support. It’s a barrier dressed up as help.

This is why disabled people fight for accessible housing, personal assistants, adaptive technology, inclusive healthcare, and social care that listens. These increase autonomy without lessening independence.

College discussed this last year by highlighting autonomy as everything listed above and its importance in society, morals, and laws, like how assisted suicide and end‑of‑life care are currently debated. It showed how deeply people value control, dignity, the right to shape personal stories, and how disabled people understand this more than most.

We know what it feels like to fight for agency over our own lives. Decisions get made for us. Choices get filtered. Risks get removed. Voices get softened. Autonomy gets replaced with protection, even when it harms us.

I see it in online disability groups. Disabled people don’t need to be independent to live full, meaningful, dignified lives. We need autonomy, choice, control, support that respects us, systems that listen, and a society that understands the difference. We need to be trusted to know what matters in our own lives, to take reasonable risks, and say what we want, not what others think we should want.

Independence is a preference. Autonomy is a right. A moment when our voice and choice make a difference.

Struggling to Sleep

2026-06-13T01:30:00.000+01:00

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

I have always struggled with pain and sleeping. Back in my twenties, despite having medication from the doctors, I would self‑medicate with alcohol, but my drinking got out of control.

Being sober now for fourteen years has meant that I’ve had to up my medication and find other coping mechanisms.

I listen to audiobooks. They are my escape. The voice becomes a steady companion as I drift off, lost in someone else’s story. Breathing techniques also help. I breathe God’s name until I find comfort and my mind surrenders. Finally, if that doesn’t help, I play the alphabet game, working through names, places, and animals through all twenty‑six letters as I hope that my body will cooperate this time.

That’s not recently been the case.

Every night begins the same way. Hannah helps me settle. Cushions, bolsters, and plush are placed around me so my legs are supported. It looks simple, but it’s a system we’ve worked out. Each item has a purpose. Each position is calculated. The goal is comfort, although comfort rarely comes. Without these, my body fights. Muscles twitch. Joints lock. Legs move just enough that any adjustment attempted increases pain rather than relieving it. Pain reminds me that rest is not guaranteed.

When that happens my coping mechanisms fail. I lie awake enough to notice every sentence of my book. My breathing, instead of pushing me into sleep, becomes a coping mechanism for the anxiety that runs through me, knowing I won’t be sleeping tonight. The techniques don’t work. I’m not drifting. I’m surviving the night.

Then there are those moments of a physical and emotional whiplash. The times when I do fall asleep, dream able-bodied dreams, and wake up to a body trapped in inaction, unable to move without help. That's so unsettling that falling back to sleep after is impossible.

Sleep is not refusal. It is resistance. My body resists the idea of stillness. The muscles that hold me together are too weak to relax. They tighten instead. The irony is that exhaustion doesn’t lead to rest. It leads to more tension. The body that cannot move cannot release. I lie there, half‑awake, half‑waiting, knowing that movement will bring pain and stillness will bring more of it.

The mental toll is harder to describe. It’s not just tiredness. It’s depletion. It seeps into thought and emotion. It makes concentration harder, patience shorter, and everything heavier. Even faith feels quieter. I still pray, although the words are slower as they become pleas for endurance and peace. Sometimes I simply say, “I’m still here.” That is enough.

Sleep deprivation changes the body. It slows recovery, amplifies pain, makes joints feel heavier, and turns small tasks into obstacles. The morning after is not a fresh start, but a continuation. The body doesn’t reset. It carries the night into the day. Tired, aching, and planning when I can rest before the day ends.

There is a loneliness in the night that is difficult to explain. The world outside is silent. Everyone else sleeps. The house feels suspended in time. I hear the audiobook, the faint noise of Hannah sleeping next to me. I count the hours, wait for Hannah to stir, and the day begins again. It’s not like I can wake her for a night‑time chat. That would be cruel. The night isolates. It turns the body into a private world that nobody else can enter.

Rest is not a position. It’s a state the body allows. Mine rarely does. Even when I take bed rest in the morning or afternoon, it’s not rest in the true sense. It’s recovery, maintenance, and the pause that lets me continue later. I’m still moving, even when I am still. Muscles twitch. Pain pulses. The body never stops working.

Acceptance helps. I have learned that fighting sleeplessness only makes it worse. I cannot force rest. I can only create the conditions for it and hope my body agrees. Some nights it does. I have a bedtime routine, use my mechanisms, and I drift off. Other nights I don’t. I have learned to take what I can. A few hours here, a short nap there, and enjoy the small victories.

There is a theological truth hidden in this. Rest is not earned. It’s given. Scripture speaks of rest as grace, not achievement. “Come to me, all who are weary, and I will give you rest.” It’s not about sleep, but being held, knowing that even when the body refuses peace, the soul can still find it. Sleep anxiety sometimes challenges that peace, although I believe it exists. It’s the quiet assurance that I am not forgotten in the hours nobody sees.

Morning comes eventually. The light through the curtains feels both relief and reminder. I made it through another night. The body is heavy, the mind slower, but I am still here. I start again. I recover. I prepare for the next night.

Sleep may never come easily again, but endurance does. That’s the rhythm of my life now. The balance between movement and stillness, exhaustion and persistence, pain and peace. The night is not my enemy. It’s simply the space where I learn, again and again, what it means to keep living when the body will not rest.

Living With Pain In A Body That Will Not Settle

2026-06-10T01:30:00.000+01:00

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

I used to describe my muscles as feeling clamped. It was as if something pressed down on them and became tighter. The more I did, the more the clamp tightened. That image no longer feels enough. I feel every muscle now. It’s a strange thing to say, let alone imagine. I feel the painful pulse in each muscle, from finger and toe, from calves to my neck, and even when I smile. It sits inside the muscle, inside the fibres. Throb. Pulse. Deep ache. Building.

FSHD pain is complex. Research shows that people with muscular dystrophy experience a mix of nociceptive pain from strained muscles and joints, neuropathic pain from irritated nerves, and central sensitisation where the nervous system becomes more reactive over time. It explains why the pain feels layered, why it spreads, and why it doesn’t switch off.

The joint pain with FSHD is relentless. It’s a grinding ache deep within the shoulders, knees, elbows, and lower back. It builds throughout the day and settles in as if it owns the space. My knees are the worst. They feel solid and hard, as if the bone itself is heavy. The pain is sharp and deep and it doesn’t care if I’m resting or moving.

This doesn’t stop at night, despite my magnitude of medication that should help. Where I cannot move myself, the lack of movement causes its own pain. Many people with FSHD experience static posture pain or immobility induced joint stiffness. When muscle weakness limits your ability to make small adjustments, your joints carry the static weight of your body. Local circulation is reduced. Joint cartilage is starved of fluid. Pressure builds and builds.

Joints rely on movement to pump synovial fluid through them. That fluid is the body’s natural lubricant. When you’re still, the fluid stops circulating. The joint feels stiff, locked, and intensely pressurised, particularly weight-bearing joints. The ache becomes suffocating. It doesn’t fade until you’re adjusted.

Even when I am resting, my weakened muscles are working hard to stabilise my skeleton. Remaining in one position causes these muscles to cramp and lock. It creates a frozen feeling, although inside everything is straining. It’s a strange contradiction. On the outside, I’m lying quietly. Inside, nothing is quiet.

This is where the feeling of being trapped has grown. When I wrote about it before it was from a place of fear and vulnerability. Now it’s a reality. I live inside a body that will not obey me, that hurts whether I move or stay still, and has narrowed my choices to the point where even comfort negotiated.

People often assume that being in a powerchair solves everything. It doesn’t. I might not be walking, but I take the physical consequences of movement all the same. Nothing is flat and perfectly accessible. Pavements are patched, filled, and repaired. Every surface is uneven. The chair may be built and shaped for me, but I still get knocked and thrown about. My legs are strapped to stop them collapsing. My back and core cannot hold position. Every journey is a mountain of bumps and divots that make my body jolt.

Sloped kerbs are never flat. There are still two inches steps that the chair must climb and fall. My back takes the impact. My neck strains to keep my head upright. The more it strains, the more it twitches. The twitching sends pain across my shoulders. The same deep, rooted pain that never leaves. People joke about jumping on the chair for a ride as I’m lucky not to walk. My body doesn’t rest. I may be sitting, but my body is running a marathon. There is nothing lucky about it.

The straps keep my legs still, which prevents injury, but the lack of movement creates its own pain. The more I do, the more it costs. I take days of bed rest to recover. Some days I can’t so I negotiate resting hours. If I move or don’t move, pain still comes. There is no middle ground. I am either trapped in the chair with supports holding me together or trapped in a motionless body that grows pain through inaction.

Living with this kind of pain affects everything. It shapes my days and my nights. It changes how I think, feel, and move through the world. It’s the part of my life people don’t see. They see the wheelchair, smile, and presence, not the hours counting muscle pulses that refuse to be quiet.

This is my body, but I carry on regardless. Pain is constant. So is the choice in how it’s managed. Paul says (Corinthians 12:9-10) that he would boast in his weakness so that Christ’s power could rest on him. I understand it. Weakness and pain are neither failure or punishment. He’s not celebrating or hiding suffering, but recognising that in the hardest moments self-reliance isn’t enough. Living in pain strips away pretence and leaves you with reality. I didn’t chose pain, yet it’s the place where I can say who I am and how I live.

When Service Styles Clash and Church Identity Drifts

2026-06-08T01:30:00.000+01:00

I’ve seen my church grow, change, survive and thrive over the last sixteen years, but recently I've seen how fragile our identity has become when different backgrounds form and push different expectations of church and service styles. When those expectations clash with other leaders and congregation members, it splits the Church’s direction.

Preaching is a good example. People connect with different sermon styles. Some prefer expository preaching, which explains a passage in its original context. Others respond to pastoral or conversational preaching, which uses questions and reflection. Some enjoy narrative or testimonial preaching, while others prefer topical or biblical‑theology sermons that trace themes across Scripture. Visual or object‑based preaching helps some people grasp ideas more easily.

My style is a blend of expository and pastoral preaching, shaped by mini‑exegesis, narrative, and occasional visual illustrations. I begin with the text, explore its background, and offer clear application with focused takeaway points. A style I learnt through college assignments. One colleague leans toward inductive, conversational preaching, using questions and personal experience to guide reflection. Two others preach a more academic‑topical and biblical‑theology style, drawing on multiple passages, outside authors, and liturgical themes. Their sermons often attempt expository depth but rely heavily on cross‑referencing and personal interpretation, which naturally requires more time.

Mine and my colleague’s style fits a ten‑minute sermon, while the academic and biblical-theology approach needs twenty minutes to explore deeper teaching. Younger and modern congregations often prefer shorter, focused sermons, while older or more traditional members prefer longer and deeper preaching.

Our church has always had a clear identity, even when it reopened under our curate. She accepted everyone who came in, whether they were wearing their Sunday‑best with high church expectations or wore casual clothes and wanted contemporary services. Our church is a mix. It’s casual, child-friendly, with short sermons and modern worship, and maintains all key traditions that are recognisably church, but doesn’t follow Catholic‑style liturgy, multiple Scripture passages, traditional clothing, or classic hymns.

This year has shown me how easily that identity can slip when the team isn’t aligned. Our Curate was there from the start. She retired when Simon arrived, came back to officiate when he left, and a local priest guided us before moving to a different parish last year. Without a guiding priest, those with different preferences have tried to shape what they want, leading to different preaching, worship, and service styles in our leadership. None of them are wrong, but they don’t merge comfortably. The congregation feels the tension. They moan about sermon lengths, understanding what a preacher has said, being bored, feeling lectured by an old fashioned school teacher, or that songs have gone backwards to 1980s styles. We've even lost a handful young families because of it.

Various styles exist across the Church of England to create a beautiful patchwork identity under one organisation. Every church, while holding faith in God, following Jesus, and sharing the life of the church into the world, expresses faith differently. There are high traditional churches, modern casual services, conservative and liberal beliefs, and even fresh expressions like Messy Church, Skater Church, or Forest Church. Understanding these styles and where they fit within that patchwork is a key feature of the Carousel Conversations that is looked for in a person before ordination.

Understanding helps people follow a thread between weeks, months, and years, creating a community of faith around where people are, a space that begins with encounter, relationship, and context, not with inherited structures, traditions, or feeling like they’ve stepped into a different church each Sunday.

Holding that thread is difficult. I want to honour the vision we’ve carried for years, protect the identity, keep things accessible for everyone, whether new or experienced, make sure preaching helps people understand Scripture rather than feel lost in it, and recognise that identity can change and grow. This is important. Leadership needs awareness of what your congregation and community needs. Without reflective awareness, we could force an old identity to stay and miss active growth in front of us, and stop the church moving forward. It’s also not about changing the style immediately. A forced and quick style change clashes against the existing identity, loses congregation members, and misses what the community needs, which has happened for centuries throughout church history. These things matter to me.

Leadership isn’t a straight line. It’s a group of people with different experiences, training, and ideas of what church should look like and can then apply their strengths to serve their community. When styles clash, the work becomes heavier. Time and energy is spent holding things together and carrying tension than moving the church forward.

I’ve felt that recently and it’s been frustrating. I want to lead well, stay humble and aware, and honour the people who stepped up when we needed them, even if their style doesn’t match the direction we’re going in.

Leadership is about staying steady when everything feels stretched. It’s choosing patience, not frustration. It’s trusting that God is shaping us, even through a messy process. It’s about holding and carrying a church while protecting and guiding it.

I don’t have all the answers. I am still halfway through the ordination process. I’m still learning how to lead while the team is misaligned, grieving, muddling through, and surviving gauging how to speak truth without causing harm, sympathetically shining a light on issues, and balancing being assertive and combative when it’s necessary.

For now, I’m choosing to stay steady, trust the process, and believe that opportunities to challenge it will occur. Churches grow through tension and peace. It’s uncomfortable, but it’s shaping us. It’s shaping me.

A Positive School Meeting

2026-06-04T01:30:00.000+01:00

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

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

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

We started with Arty. Four years of school and negative behaviour patterns meant this wasn’t unfortunately a new situation for him, despite him being significantly better now. We reviewed his four exit passes for movement breaks, regulation time out of class, sensory uniform adjustments, and early exits to avoid crowds. The last one was the one that caused the incident. Four passes are too much. If staff cannot understand them, how can he? I suggested a two‑card system. Yellow for school‑based actions. Red for dysregulation. A simple system that helps staff respond and keeps Arty accountable too. Miss L liked the idea but will speak to the SENCO.

Then we moved to the phone call.

Miss L apologised. Their calls are recorded for staff safety, accountability, and training. She listened to the call and was not happy.

She explained the school policy. If a call becomes difficult, staff must stop and book a meeting with the parent and the child’s head of year. This didn't happen.

The staff member asked for my wife. She didn’t acknowledge me answering instead of Hannah, but launched straight into her agenda. No greeting, no recognition of who she was speaking to, and no awareness of my disability, Arty’s profile, or his exit passes.

The Head heard me respond politely saying, “Miss, I have listened to you. Can you let me finish my sentence?” She heard me say “Miss” repeatedly while her staff member cut off me again and again, escalated the situation, ignored my attempts to ground the call, patronised me, and said “ok” when I asked for senior staff, as if she was untouchable. Miss L heard my distress and how it grew. It wasn’t ok. There was no empathy or apology.

She said the call broke school policy and staff expectations. She didn’t say it broke the SEND Code of Practice, but she didn’t need to. I said it in my complaint. She knew it.

I gave four possibilities to why it happened.

1. Implicit ableism (I experience this daily).

2. Gender bias (As Dad I’m not the regular parent that discusses Arty).

3. Power imbalance (Staff vs parent)

4. A combination of any and all above.

Miss L nodded at the power imbalance. It was possible, but I asked her to ask one question. Did she know I am disabled? If she did, then ableism is part of this, whether complicit or implicit. If she didn’t, then she failed in her pastoral role to Arty and in her actions to me. Either answer is bad.

The head then raised something I didn't know. This staff member never contacted a senior staff member to call me. I waited all day before sending my complaint in, I sought a fair process, but nothing happened. Miss L wasn’t happy. She praised me for my patience and how my experience as an ex-teacher helps them. I hold them to best practice. This was nice. I have always found it difficult to balance the role. I see what they should do, but as a parent, I see too much of what they are not doing.

She was right. If Hannah answered, Arty would have had a detention. No one would know the staff member mishandled the situation and the phone call or that the policies and profiles were ignored. I, however, know what should happen and what was wrong. This allows them to improve.

So, what now?

I asked for specific outcomes. The staff member needs Disability‑informed training, policy training, pastoral training, and a review of how this was handled. I wasn’t seeking her to be sacked, but I asked for this to be recorded on her file. If it happens again, a pattern forms. Miss L agreed. She also wants to arrange another situation between her and me to see if things are handled better. I am weary. I also asked for all staff to be reminded of Arty’s profile. He’s a young carer and child who deals with my health. A bad day for me means a bad day for him. Staff should know this alongside his SEN profile and family history.

Miss L then surprised me.

She wants the staff member to write a written apology. The type of apology that they expect from a child when they have done wrong. She also wants to use the call recording in staff training and address and shine a light on the wider issue of rushed calls that create unhealthy conflict.

Half term has passed. I expect the written apology, transcript, and a way forward to be here soon. When it arrives, I will update you. For now, this was a productive and positive school meeting.

Living With Photosensitive Skin: When Sunlight Turns Against You

2026-06-02T01:30:00.000+01:00

I have written about almost every part of my body and health over the years. I have covered ASD, various diagnoses, mental health struggles, FSHD at every stage, disability, harm, thirty years of lived experience, and even personal battles like alcoholism and staying sober. Yet somehow, I have never written about the one condition that has followed me quietly through most of my life. It affects me all year round, although far more in warm weather. Polymorphic Light Eruption.

[Image 2. A patch of skin with redness and small raised bumps. The area looks inflamed and irritated, showing the typical reaction pattern of my photosensitive skin condition.]

[Image 3. The back of my hand shows multiple small red spots and bumps. They vary in size and appear inflamed, representing how the condition affects exposed areas like my hands.]

[Image 4. The back of my neck and scalp area show redness and irritation with small raised spots. This is one of the most sensitive areas when my photosensitivity flares.]

[Image 5. A close view of irritated skin showing redness and scattered bumps. The uneven colour and raised spots highlight the inflammation typical of polymorphic light eruption.]

[Image 6. A close view of my arm with scattered red bumps and areas of irritation. The skin shows mild inflammation and uneven tone, which is typical of how my photosensitive skin condition appears on my arms.]

These red bumps, spots, blisters, and patches of irritated skin have been with me so long that I do not remember when it started.

My first clear memory of it was a trip to Margate when I was twenty. I was sunburnt, peeling, uncomfortable, and covered in bumps across my hands and arms. They were angry, raised, and impossible to ignore. Nothing helped. I may have had it earlier, but that was the first time I remember thinking, “This is not normal.” I am forty‑three now. That was a long time ago.

The pattern has stayed the same. Red, thick bumps and spots. Small blister tops that ooze clear, sticky liquid when they are popped, scratched, or accidentally caught. Swelling. Heat. Itching that wakes me up. I try not to scratch, although I do it in my sleep. The photos above were from 2020, and they were not even the worst. They were simply the ones I captured on a day they were inflamed.

The condition is a form of photosensitivity, like polymorphic light eruption (PMLE). PMLE is one of the most common reactions to sunlight. The skin becomes hypersensitive to UV light, even in small amounts. It can appear as red bumps, spots, raised patches, or blisters. The clear fluid is serous fluid, something the body produces during inflammation. It is unpleasant, although normal for this kind of reaction.

What makes it harder is that it does not only happen in summer. I get it all year. Heat makes it worse. Even travelling in a car with sunlight hitting one small area can trigger a flare. UV‑A light passes through windows, so “not being in the sun” does not protect me. My hands and neck are the worst, although it appears on my forehead when I am not wearing a hat, on my arms when they are exposed, and anywhere that gets direct sunlight.

Clothing becomes a strategy. I do not wear shorts or T‑shirts. Covering my body is the main plan. Jeans are my balance between warmth and coolness, especially when I am in my powerchair and my legs do not move much and a breeze hits them. Long‑sleeved cotton shirts are my best option. They cover my arms, keep me cool, and protect my skin. Cardigans are impossible in this heat, although if it is sunny and cooler, a thin cardigan can help. Sun cream helps, although it has to be high, like the factor 70 I am using. Aloe vera and Cetraben soothe the skin, reduce itching, and calm the most swollen areas. I do what I can, as often as I can.

Living with FSHD means I already balance my days carefully. Adding this condition makes everything harder. It is not the same as my muscular dystrophy pain. I am used to that. I know how to sit, adapt, and manage it. This is different. This is the kind of discomfort that gets under your skin, literally and emotionally. It is like earache or toothache. It is small, but relentless. It becomes a nuisance and an irritant. Pain is pain. Everyone has their limit. I never compare one person’s struggle to another’s. I measure by tolerance, and this tests mine. Anything that anyone has to go through that is not part of their daily battle is always worth acknowledging.

The medical explanation is simple. The lived experience is not. Photosensitive conditions can flare with:

• UV exposure

• heat

• sweat

• friction

• stress

• certain medications

• reflections from water or glass

They can appear hours or days after exposure. They can last for weeks, can scar, and disrupt sleep, routine, and confidence. They can make you feel like your own skin is working against you.

This is why I wanted to write about it now. Not because it is new, but because it has been part of my life for so long without ever being spoken about. Most information online is medical rather than lived experience. It is important that I document it. These bumps and blisters are not dramatic. They are not life‑threatening. They are not the headline condition in my story. Yet they shape my days, my clothing, my comfort, and my choices.

I live with a progressive muscle disease and disability that causes chronic, daily pain, although I also live with this. It is time it had a place on the page.

Accessibility vs Usability

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

People often believe that if a space is accessible, it must be usable. These words sound similar, but they do not mean the same thing. Accessibility is the presence of something. Usability is the ability to use it safely, independently, and without barriers. The difference becomes clearer when you live with a disability and spend your life navigating the gap between the two.

The Equality Act entered UK law in 2010 and brought more than 100 separate pieces of legislation into one framework. Sixteen years later, the world can feel more accessible and inclusive. New buildings must be legally accessible. Old buildings must make reasonable adjustments. Although some skirt around what “reasonable” means, I have seen many thoughtful adaptations added to historic and listed buildings without fuss. This was especially true when Hannah and I took on our accessibility challenge to make Rochester more accessible in 2020.

Yet systems can look accessible on paper while remaining unusable in practice. Policies, roles, and the language of inclusion often create a polished surface that hides deeper barriers. When power sits unevenly and conformity is rewarded, accessibility becomes a performance rather than a reality. Even soft‑power spaces, like friendly rooms, pastoral tones, reassuring words can disguise pressure. They sound gentle but often guide disabled people toward compliance instead of collaboration. It is the difference between being invited in and being allowed to participate, equality and equity, and accessible and usable.

Last Sunday I was preaching at church. The service was shaped by grief after the sudden loss of our Curate, Sue. Many of us were mourning. I had to hold the space, preach pastorally, honour Pentecost, and link it to our current series. I struggled to write something that felt right. The service and the balance mattered.

When I arrived, the chancel was set for able‑bodied leaders. A table had been placed for the congregation to light candles in Sue’s memory. The lectern and mic stand were positioned where able‑bodied preachers stand. My ramp, which I bought so I could reach the chancel and lead like anyone else, was brought out, but it became obvious that I would hit everything. The ramp gave me access. The layout removed usability.

I asked for the table to be moved back more than once. Each time I explained why. Each time the team struggled to see the problem. The lectern had to be moved to the opposite side because my wheels would catch the tripod legs. Logic vanished. I had the equipment out. I should have been happy. Accessibility was present. Usability was not.

A few days later I was at our fortnightly coffee morning. I sat with a group of people who all live with different disabilities. We spoke about the Diocese Enable Team, the new disability office, my advocacy, this blog, and the difference between equality and equity. Many believed we were already an inclusive and accessible space. I understand why. Over fifteen years we have made huge progress: a toilet with disability supports, custom metal ramps replacing old wooden ones, a bridge ramp for the bell tower, and the foldable ramp for the chancel. We are careful with touch and physical contact. I held coffee mornings for disabled people and carers. The church has twenty‑seven disabled children and adults. I have pushed for change for a long time.

This is all amazing. The church is accessible, but that does not mean it is usable.

The toilet corridor now stores stacked chairs, making the turning circle tight. The kitchen counter is high, which means hot drinks are lowered down towards my face. The cake and biscuits sideboard is blocked by tables and chairs. Even if I reached it, the depth means I cannot access anything at the back. I navigate my chair around furniture, pillars, and people while holding a hot drink. Most weeks someone makes my drink and brings it to me. They tell me what cake is available. They serve me. This is kind, welcoming, and inclusive. It is not usability. It is a workaround. An unspoken reasonable adjustment in an unusable space.

Then came Thursday when I went clothes shopping. Some shops were accessible but not usable. One had a ramp so steep — around a 50 to 60 degree angle — that going down felt unsafe. Going up pushed me sideways. If a plant box stand had not been there, I would have fallen. The staff were confused because the ramp “worked for buggies.” It took all my strength not to roll my eyes. I hate wheelchairs being compared to buggies. The ramp showed they had considered parents with prams, which is good, but their idea of accessibility centred on a group that is not disabled. It was accessible for buggies and maybe manual wheelchairs if being pushed. It was not usable for powerchairs or those with walking issues.

They were kind and meant well, but didn't understand. It was my knowledge of Rochester, the 2020 accessibility campaign, the shops with ramps, and which ramp belonged to which shop that solved the problem. They ran to the comic book shop, borrowed their ramp, and it worked exactly as I said it would. I would have been stuck there otherwise.

These examples highlight the difference between accessibility and usability. Accessibility is the presence of a ramp, a toilet, a lift, or a space. Usability is whether a disabled person can use it safely, independently, and without relying on others to bridge the gaps. Accessibility is a tick‑box. Usability is lived experience. Accessibility opens the door. Usability lets you through it.

Most places aim for accessibility. Disabled people, unfortunately, live in the space between the two. Usable spaces should now be the aim.

A Pentecost Study: Wind

2026-05-29T01:30:00.000+01:00

A Pentecost Study: Part 3 - Wind

“Suddenly a sound like the blowing of a violent wind came from heaven and filled the whole house where they were sitting.” (Acts 2:2)

Wind is one of the oldest and most mysterious images of God’s presence. In Hebrew, the word ruach means wind, breath, or spirit — the invisible movement that gives life. In the beginning, the Spirit of God hovered over the waters (Gen. 1:2), stirring creation into being. Later, God breathed into Adam’s nostrils the breath of life (Gen. 2:7). The same breath that moves the air also animates the soul. Wind is not seen, but its effects are felt — it moves, fills, and transforms.

Throughout the Old Testament, wind often marks divine action. It parts the Red Sea (Exod. 14:21), brings rain to the dry land (1 Kings 18:45), and carries the voice of God to prophets in the wilderness. Sometimes it comes as a whisper, sometimes as a storm. Even the very name of God — YHWH, often vocalised as Yah‑weh — moves like breath through the lungs. Ancient teachers noticed that the name itself sounds like inhaling and exhaling: Yah on the in‑breath, weh on the out‑breath. God’s name was heard not only in words but in the wind moving through mountains, deserts, and human bodies. The breath of life was the breath of God.

In the New Testament, this image deepens. Jesus speaks of the Spirit as wind: “The wind blows wherever it pleases. You hear its sound, but you cannot tell where it comes from or where it goes.” (John 3:8) After the resurrection, He breathes on His disciples and says, “Receive the Holy Spirit.” (John 20:22) Breath and wind become one movement — the life of God entering human lungs, the divine presence animating human hearts.

At Pentecost, this breath becomes a storm. The sound of rushing wind fills the house, sweeping through the gathered disciples. It is creation happening again — the Spirit breathing new life into the world. The same breath that formed Adam now forms the Church. The same wind that carried God’s name across the hills now fills the upper room. It is as if the disciples hear Yah‑weh move through the space — the living name of God filling their lungs and their courage. The Spirit’s arrival is not gentle air but holy power, moving through ordinary people and sending them out with voice and boldness.

So what does that mean for us today?

We live in a world that often feels breathless — hurried, anxious, exhausted. We hold our breath through stress, fear, and uncertainty. Pentecost reminds us that the Spirit still breathes. The wind of God still moves through closed rooms, weary hearts, and silent prayers. It fills what feels empty and revives what feels lost. The Spirit’s wind is not a storm to fear but a breath to receive.

Sometimes the wind comes as renewal — a fresh start, a clearing of the air. Sometimes it comes as rest — the quiet inhale and exhale of grace. Sometimes it comes as calling — pushing us gently toward what God is doing next. Many Christians pray with the rhythm of God’s name: breathing in Yah and breathing out weh, remembering that every breath is a gift of the Spirit. The wind of God is always life‑giving, never life‑taking. It is the breath that carries us forward.

Wind is not a feeling. It is a movement. It is the way the Spirit breathes life into creation and into us.

A reflection

The wind of God is the breath that never ceases. It moves through creation, through history, through us. It is the Spirit’s whisper that revives what is weary and awakens what is waiting. Pentecost wind is the breath of new life — invisible yet undeniable, gentle yet powerful, the living rhythm of God’s presence.

Questions

1. Where have you felt the Spirit’s wind or breath — in renewal, rest, or calling? How did it move you or change you?

2. What parts of your life feel breathless or still, and how might you open yourself to the Spirit’s movement there?

3. As Pentecost continues, what would it look like for you to breathe deeply of God’s Spirit — to let His wind fill, guide, and carry you into new life?

A prayer

Spirit of life, You who breathe creation into being and fill the world with Your wind, breathe on us again. Where we are weary, refresh us. Where we are fearful, steady us. Where we are silent, speak through us. Fill us with Your breath and send us with Your wind, that we may live and move in the rhythm of Your grace.

Amen.

If you would like to read Part 1 and Part 2, please click on the links.

When Your Core Gives Way

2026-05-27T01:30:00.000+01:00

Living with a progressive condition teaches you to recognise patterns, the shifts, changes, the way FSHD reshapes strength, posture, and movement. I have written about the years of falling, pain, feeling trapped in a body like this, the early arm weakness, the journey into mobility aids, the fear of using a chair too early, the misdiagnoses, the institutional barriers, and becoming a full time powerchair user. Despite all the years and the ever evolving health, my rare condition continues to surprise me as the FSHD world keeps progressing.

My lower back and core strength has begun to fail. It feels like the old days when my legs used to give way. My back twitches. It shakes with a weakness that screams through the muscle. A weakness I recognise, but not the location. I wobble when I sit. I slouch more. My body cannot hold a structured frame.

It has become noticeable eating dinner, getting dressed, lifts, transfers, in the shower chair and on the toilet. Places where I should feel secure. Where I have felt secure before.

I am blessed with equipment. I have a Vertica Lift Seat over a Gerberit Aquaclean. The riser has been with me for years. The Aquaclean is new. We converted the bathroom into a wet room and it made sense to keep everything in one place. The problem is the toilet itself, where the back is larger. The riser fits, but the space behind is further back to fit the functions. If I lean even slightly, I collapse into that gap and against the tank. I cling and hold on. My back twitches. I brace in case I fall.

[Image 2. A modern bathroom showing a toilet fitted with a Vertica Lift Seat over a Gerberit Aquaclean system. The riser includes padded handles to support safe transfers and sits within a white, marble‑patterned wet‑room. Storage shelves hold hygiene items, and a tall bamboo plant adds warmth to the space.]

[Image 3. A modern bathroom showing a toilet fitted with a Vertica Lift Seat over a Gerberit Aquaclean system. The riser includes padded handles to support safe transfers and sits within a white, marble‑patterned wet‑room. Storage shelves hold hygiene items, and a tall bamboo plant adds warmth to the space.]

It mirrors getting dressed and undressed. Pulling a top over the head is sometimes just enough to knock me off balance. I think the fact that my arms are restricted makes that worse. I can't hold on. I can't secure myself.

In both scenarios, that old falling anxiety hits, like the days when falling was a weekly expectation. Weekly was optimistic. If I fell once, the chance of another increased. When I transitioned to a wheelchair, that fear stopped. I was safe. I shouldn’t fall again. My mind regained security. Losing it now feels like stepping backwards into an old fear I had outgrown.

The shower chair is worse. It is supposed to be a toilet and shower chair. I have no idea how people sit comfortably on it. My muscle loss means I feel like I am sinking through it. The plastic back is easy to clean but not structured. A push forward pulls me back. A push back throws me forward. My core cannot counter the force. The fear of face planting is real.

[Image 4. A shower chair designed for toileting and washing. It has a grey open‑centre seat, padded armrests, large rear wheels with light green tyres, and smaller front casters. The white frame includes footrests at the front. The chair sits in a wet‑room with marble‑patterned walls, a shower hose, and a hanging sponge.]

Eating has become difficult. I have gained weight since becoming a powerchair user. Less movement does that. I try to eat less or when I am hungry rather than at set times. I think it’s working. The MD belly distorts it, so judgement is difficult. However, where my body slouches, it squashes my stomach. I sit down hungry. I raise my hand as high as I can. My head drops to meet the fork. My back curves. My neck arches. I feel like a crumpled ball. My appetite soon goes. I'm full.

This also affects every day transfers. When Hannah lifts me, it resonates deep inside. I grip, cling, shake, and hold on because I don’t know which way I will fall. Every slide and moment where I need my body to hold itself for even a second. Then the tension and wobble return. I worry I will fall back, fall forward, hit the car door or the floor. I hate that the fear has returned.

I am not even sure what has caused this shift. It could be natural progression. It could be years of relying on a powerchair that holds my posture for me. It could be weight changes. It could be the slow weakening of deep stabilising muscles that FSHD is known for. Many people with muscular dystrophy, MS, spinal conditions, or EDS describe similar stages. Some lose the ability to sit upright. Some develop scoliosis. Some experience nerve pain, spasms, or the crushing fatigue that comes when the core stops supporting the rest of the body. Others talk about diaphragm weakness, rib instability, or the way chronic slouching reshapes the spine. These stories are common online. They are shared quietly in forums, support groups, and disability communities. They are rarely spoken about publicly. It’s an uncomfortable topic.

The pain is part of it. For me, it’s a deep, dragging ache that sits in my lower back, while my front feels weighted and pulls everything forward. The typical “MD belly” as the 2020 photo below shows.

[Image 5. A side‑on photo from 2020 showing your torso, highlighting the curved spine and the typical “MD belly” associated with muscle weakness. You are standing indoors wearing red shorts. A shoe rack, wall dispenser, and door storage basket appear in the background.]

My back feels stretched and compressed. My stomach crushed. My breathing feels heavier when I slouch. My shoulders sag. My neck strains to compensate. It cascades. One muscle to another. It worries me. It feels like the start of a stage I thought I had already lived through. A stage I believed I had left behind when I stopped falling.

This is the reality of progression. It is not dramatic or sudden. It is a quiet shift that changes everything. It is the moment you realise that the muscles you relied on have stepped back and FSHD has stepped forward.

This is what living with FSHD and the top severity looks like. It’s not one story. It’s the journey and constant renegotiation of what your body can do.

This is the next chapter.

Stepping Into Disability Communities

2026-05-23T01:30:00.000+01:00

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

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

I joined lots of Facebook groups for FSHD, Muscular Dystrophy, World FSHD news, wheelchair users, accessible places and holidays, keep fit and healthy living, disability theology, disabled families, and fellowship. Spaces where disabled people gather, talk, cry, laugh, and survive together, discussing many different types of institutional harm.

You would think I would have done this years ago. I didn’t.

I grew up in the 90s. It was a different world. My Mum pushed me to be more. Do more. Become more. Disability was something I had. A part of my being. I had to prove myself before I “died at sixteen.” I went to school, Sixth‑form, Uni, work, and created a family to show I was more than my condition. It was the right method for a teenage boy in that exclusive decade but I built internalised ableism that I am still unpicking.

I learned to survive. I minimised, pushed through, hid parts of my disability that made others uncomfortable, hid parts that made me uncomfortable, accepted scraps of accessibility, navigated a world that wasn’t built for me, and accepted that sometimes you take the only option you have, even if it isn’t good enough.

Joining the disability groups has not been easy. I read posts filled with pain. Often finding physical pain in every thread. The recognisable aching, throbbing, and pulsing pain that makes touch unbearable. The painful recovery after physiotherapy that for many doesn’t help. The fear of losing more muscle, falling, and waking up weaker than the day before. I know that pain. I live it. I also see pain I don’t know. Pain that reminds me that suffering is always personal. People deal with pain so differently that something one person can easily deal with, another finds excruciating.

There is psychological pain too. The waking from an able‑bodied dream. The pain of being stared at, judged, belittled, patronised, dismissed, spoken over, and silenced. The pain of feeling like a burden and being treated as anything except a person.

It is hard, especially on the days I feel like that too. Seeing ableism across many corners of the world can sometimes feel so overwhelming. Reality is often difficult to swallow. My condition is degenerative. I’m losing muscle and function. I am in the top one percent of severity. Seeing others further along the path is difficult. It worries me.

Maturity, however, has changed my outlook. People often search for the question, “What is the difference between a disabled person and a person with disabilities?” The last few years have helped me answer it.

[Image 2. This visual contrasts identity‑first and person‑first language in disability discussions. The left side, ‘Disabled Person,’ highlights empowerment and community through the social model of disability. The right side, ‘Person with Disabilities,’ emphasizes individuality and dignity before condition. Both sides feature wheelchair users, illustrating the shared humanity behind different linguistic perspectives.]

A disabled person sees disability as part of identity and community. Empowered by the social model of disability. A person with disabilities sees disability as one aspect of self. Centres individuality and dignity before condition. It is a person‑first or disability‑first mentality within identity politics and understanding.

I was raised believing being a disabled person was wrong. I pushed and fought to prove I was a person with disabilities. I no longer believe that. Both identities are valid, real, lived, and deserve respect.

The top trump comparisons are frustrating though. The “I had a bad night” followed by “I haven’t slept in three days.” The “I have new medication” followed by “I take eleven tablets a day.” The constant reminder that someone always has it worse feels at times like wallowing. Yet, it is the reality of how identifying as disabled first can consume every moment for some, but not all, disabled people. It used to frustrate me. I understand it now as the only language some people have.

I needed to step into this world, learn, listen, and understand the people I feel called to serve. When I’m ordained I want to support disabled people more. Someone needs to sit in the mess with them. To truly advocate you need to hear the stories that break people open. I can’t build accessible spaces if I don’t understand what makes spaces inaccessible in the first place.

These groups help me grow, see, and understand the depth of need, harm, resilience, and faith that many disabled people carry. Life that survives pain, injustice, exclusion, and the world as it is.

It is not easy. I will keep building on it. I will learn, show up, step into community, and shape a ministry that reflects who I am as a disabled man and a man with disabilities. All of it held together.