Stepping Into Disability Communities

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