🌱 Why This Blog – And Why Now? 

For most of my PhD, I debated writing a blog. I’d draft one, then delete it. Nothing quite captured what I wanted to say, until I reached the final stages of analysis and writing.
 
 One theme kept rising to the surface: co-production. My journey with it, rooted in both personal experience and academic research, has been full of questions, challenges, and quiet revelations. This blog is an attempt to explore that journey outside the confines of a thesis chapter.

👂🏽 A History of Being Heard... and Ignored 

 My experience with user-involved research didn’t start in university. It began much earlier; as a Deaf child.

I remember social workers visiting us, asking for our views. We would share honestly, but nothing ever changed. There was no follow-up and no feedback. Just the feeling that our words / signs went into a void, while someone else, somewhere, got the credit.

That pattern repeated itself across services, particularly in the NHS and social care. Over time, I became cautious and even suspicious. Who really benefits when we are “consulted”?

🧩 Researching in Silence: The Language Deprivation Dilemma 

 Years later, I worked with the late Susie Balderston on a research project commissioned by NHS and Social Care Commissioners. We aimed to gather views from Deaf community members facing a specific issue, many of whom had been deprived of language from a young age.

The challenge was immense. How do you ask someone for their views when they’ve never had access to language or the frameworks to reflect on those experiences?

This blog won’t unpack the long history of sign language deprivation—you can read more about that [here] and [here]. I did, however, reflect on these challenges in a report by Alison Faulkner for the INVOLVE/NIHR Conference, which you can access [here].

🎓 Learning, Growing – and Challenging 

 This project led me to deepen my research skills through an MA in Social Research. I was fortunate to study at the University of Leeds, within its Disability Studies department. Professor Colin Barnes welcomed my challenges about language, and we often laughed about the odd, well-meaning terms created by those in power, as he refers to himself as a “special school survivor” and he did not need to explain to me the illogic of putting deaf, and blind, children together in the same school.
 
 🪖 Lessons from the Field: Veterans, Promises, and Disappointments 

Years later, while working for a specialist NHS service for UK Military Veterans, I was involved in a bid renewal process. I pushed hard for proper public engagement. The early consultations looked promising, and I believed the organisation would follow through.

But I moved on to start my PhD, and follow-up never happened. Later, I ran into participants who told me they’d heard nothing. No feedback, no updates. Just like my own childhood experiences. This time, I wasn’t the participant, I was the researcher. And still, we fell short.

🤔 So Where Am I Now? 

My PhD is rooted in co-production. It’s been full of rich, but often uncomfortable, conversations: Is this really feasible? What does it take to do this well?

I’ve read a lot. I’ve listened more. And I’ve started to see where co-production, as it’s often practiced, misses the mark. We’ve moved a long way from the bold, early rallying cry:

“Nothing about us without us.” 

✍🏼 Why I Finally Wrote This 

 I realised this reflection didn’t belong in my thesis, it’s too personal and too open-ended. But it still needs to be said. Co-production isn’t just a research method. It’s a promise. One we keep breaking.

So, this is the blog I once couldn’t write. Because now I’m ready. And I believe we need to be having this conversation, not just in academia, but everywhere.

 

#phd #coproduction #engagement