This past weekend I had a meeting with my Member of Parliament (MP) to discuss two pressing issues: the ongoing Personal Independence Payment (PIP) review and the broader, systemic challenges faced by disabled people across the UK. While I genuinely appreciate his respectful listening and his evident attempts to show empathy throughout our conversation, I left the meeting with profound questions and a sense of unease about the true meaning of "co-production" in modern policy-making.

My MP informed me that the current Bill doesn't directly include PIP, but that a review of the system is now, thankfully, underway. My immediate, visceral reaction to this news was to liken it to "having a wedding and sending the invites afterwards." How can we, as disabled people, be expected to genuinely "co-produce" a system when its fundamental structure has already been established, seemingly without our initial, integral input? It feels like an afterthought, a consultation on the minutiae once the crucial decisions have already been set in stone.

He went on to suggest that this review was a direct result of disabled people, like myself, consistently speaking up and putting pressure on the government. And yes, I wholeheartedly agree that pressure undoubtedly plays a vital role in bringing about change. However, as I articulated to him, "We shouldn't have to fight this hard just to be included. And even with a review, who's to say it will actually lead to meaningful, positive change?" This isn't merely about the specifics of PIP; it's about a much larger, pervasive issue where the voices and lived experiences of disabled people are often brought into the policy-making process far too late, long after the most crucial foundational decisions have been made.

The Dangers of Empathy Without Action: A Hypothetical, Yet Terrifying, Reality

To truly underscore the potential, and often devastating, consequences of this "after the fact" approach to co-production, I shared a stark hypothetical scenario with my MP: Imagine if something as significant as the Assisted Dying Bill were to pass without robust, iron-clad mental health safeguards firmly embedded within its framework. What, then, is to stop someone with a chronic, debilitating condition and an untreated mental illness – a person who might feel like an unbearable burden on their loved ones and society, and who struggles to access adequate support – from viewing this as their only viable option?

His immediate response was a reassuring, "That wouldn't happen." Yet, many of us within the disabled community know, with a chilling certainty, that it absolutely can happen. Tragically, it already has, even in the absence of such a bill. This isn't some far-fetched, nightmarish speculation; it is a very real, deeply personal concern born directly from the lived experiences and anxieties of disabled people navigating a system that often fails them.

While I respect my MP's attempts to empathise with my concerns, I firmly believe that empathy without concrete, decisive action leaves us exposed and vulnerable. It is simply not enough to merely acknowledge our struggles or express understanding; there must be a tangible, unwavering commitment to integrating our insights, our knowledge, and our lived realities from the very inception of any policy or service development that impacts our lives.

Co-production: More Than Just a Consultation on Paint Colour

The persistent feeling of being "co-produced" after the fact is profoundly disempowering. It truly is akin to being consulted solely on the paint colour of a house that we weren't allowed to help design from the ground up. The fundamental structure, the very foundations, the layout of the rooms – all of these critical elements have been decided upon without our meaningful input. Our "contribution" then becomes a superficial addition, a decorative flourish, rather than an integral, formative part of the architectural design process.

True co-production demands that disabled people are not just present, but are actively and meaningfully involved at the table from the initial conceptualisation stages of policies and services that affect our lives. It means that our unique expertise, which is derived directly from our lived experience of disability, is not just acknowledged, but genuinely valued, respected, and systematically integrated at every single stage of policy development. It's about designing with us, not simply consulting on us.

We must collectively move beyond these often tokenistic gestures of inclusion and strive towards a genuine, reciprocal partnership where our voices are not just heard, but are the very architects of the policies that define our lives. Anything less than this is not authentic co-production; it is, quite frankly, a profound and costly missed opportunity to build a truly inclusive, equitable, and just society for all.