A tribute to John Evans: A pioneer of independent living and co-production

At the end of Co-production Week 2025, we want to celebrate the life and legacy of John Evans—a remarkable man, a fearless campaigner and a true pioneer of the Independent Living Movement in the UK and beyond. John was not only a passionate advocate for disabled people’s rights; he was also a generous colleague, a strategic thinker and a tireless force for justice whose influence will be felt for generations to come. 

John’s life and work were inseparable from the growth of the Independent Living Movement. As one of its original architects, he helped to radically transform the way we think about disability, support and autonomy. Drawing on his own lived experience, John campaigned relentlessly to ensure that disabled people had choice and control over their lives—not as a matter of charity or care, but as a matter of rights and equality. He was instrumental in setting up some of the UK’s first centres for independent living, and his leadership helped lay the foundations for direct payments, personal assistance and the principles of self-directed support. 

John brought that same energy and clarity of purpose to his work with SCIE. As a member of SCIE’s Co-production Steering Group, he was instrumental in embedding co-production into the organisation’s ethos and practice. He believed—and showed through action—that real change happens when people with lived experience are at the centre of designing and shaping the systems that affect their lives. 

His contributions were always grounded in respect, clarity and a deep belief in the power of people working together to create change. Whether in national forums, board meetings or local action groups, John’s voice was one of calm determination and moral clarity. 

This year’s Co-production Week is both a celebration and a recommitment to his vision. John helped create this movement—not just through words, but through decades of leadership, collaboration, and conviction. John showed us what leadership, courage, and solidarity look like. We carry his legacy forward by continuing to do what he always did: working together, thinking boldly and never losing sight of the power of people coming together as equals to work in coproduction to effect change. 

In early summer 2020, when COVID-19 held the world in its grip, John had just become Chair of the SCIE Co-production Steering Group. In his role, he recorded a welcome video for the upcoming Co-production Week 2020, which that year had to take place online for the first time due to the pandemic. In the years that followed, it would become a bit of a tradition for John to make these videos, and I remember many a unique moment of us trying to get the recording right with our very basic equipment. In addition to this, we were having a rather hard time squeezing into these brief clips everything that John felt important to include. 

He was incredibly passionate about co-production, and so there was a lot he had to say about it. Looking back at the Co-production Week 2020 video message now, it reminds me of so many different aspects of John’s personality that I loved and that I know his friends and colleagues appreciated just as much. You can sense his enormous commitment to co-production, his firm belief in its importance and his wish to share his experience. 

John was always very personal in discussions and presentations, giving people an unusual insight into his life, his hopes and his challenges. It is only now that I think I fully understand why he would do that, why he would not shy away from exposing things that other people might try to hide rather than discuss. With his openness, John made people see the importance of lived experience, of considering other perspectives, and of including everyone who is potentially affected by a decision-making process. John’s life was about choice and control, for himself and other people; this is what he fought for, and this is exactly what co-production is about. 

There is another aspect of John’s first welcome video message from 2020, which is so very typical of him. When COVID-19 hit and the entire country was in lockdown, it was hard, there is no other way to put it. I am sure everyone remembers that all too well. John and I were extremely worried about his safety due to the specific situation we were living in and John’s health condition. John reflected on that on various occasions, again in his usual open manner. But, John being John, he focused on the positive side of things—and in his message pointed out how co-production made all the difference during lockdown in communities all over the country, when local groups formed to improve the situation, to help and to look out for each other.  

As John said, “co-production has come into action.” He went on to mention how this important experience could and should be used to learn how to improve social care—this focus on the future, on learning and developing and changing things for the better, again says so much about John’s remarkable personality. 

Back in 2020, the theme of the Co-production Week was ‘Co-production in a Changing World’. And how the world has changed since then! It’s hard to believe it’s only been five years since then. For me personally, the biggest change was, of course, that John is not here with me anymore, not here with us to celebrate this year’s Co-production Week. I do know, though, that he would have wanted all of us to celebrate, to carry on, to include co-production in every aspect of our lives, to insist that it’s being implemented on every level. 

This year’s Co-production Week’s theme is ‘Innovation Through Co-production’. I can easily picture John talking about how important a topic that is and engaging in discussions and workshops, sharing his takes and eagerly absorbing what the other participants have to say. The annual Co-production Week was always one of the most important weeks of the year to him. 

I first met John in Brixton in the mid-1990s at an event that brought people together to discuss advocacy. He was always a pleasure to work alongside, someone who really listened and responded respectfully to everyone, while maintaining an unwavering commitment to improving the lives of disabled people. 

Not only was he a valued and supportive colleague, but he was also a lovely person with wide-ranging cultural interests, and the thing that springs to mind as I write this was a conversation we had about music in Sheffield around this time last year. It was a pleasure and a privilege to know him.  

John was a true ambassador for co-production. His light shone brightly for years as he campaigned tirelessly for the Independent Living Movement and the rights of disabled people to live independent, fulfilling lives. He had this relentless warmth and positivity. Even in challenging circumstances, he would remain open, constructive and collaborative. He had a quiet feistiness and loved music! All of this will stay with me. It was a pleasure working with him on the SCIE Co-production Steering Group, which he ably chaired for several years alongside countless other projects. He’ll be missed, but I know his spirit and the legacy of his co-production work will live on.

I didn’t really know John, but I worked with him on designing Co-production Week last year. I always found him to be a quiet, gentle man with amazing knowledge. He had a ‘way’ about him.  

When I first started at SCIE, my world was personally reeling after being diagnosed with a serious illness (thankfully behind me!), and it was a struggle some days to retain my ‘poker face’ and keep on keeping on.  John Evans was there for me. Sharing an illness meant he was instantly in tune with what I was going through. We had open and honest conversations that you can’t have with anyone else; things we didn’t need to explain were understood.  He was quite simply just wonderful to me at a very vulnerable time.  This was the essence of John; I will never forget his compassion despite his own trials and tribulations.  A truly lovely man.