Presence vs Participation

Over the last few months I’ve written about equality and equity, accessibility and usability, independence and autonomy, and survivors and victims. These are topics that people often confuse, yet the gap between them is where disabled people live. Those gaps are important. The difference needs to be discussed. This time, I wanted to discuss presence vs participation.

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.