In recent years, the concept of lived experience is everywhere. It’s splashed across charity’s social media pages and stands out clear and strong in their funding applications. But, the longer I spent working in a policy-focused charity that purported to advocate for Gypsy, Roma and Traveller (GRT) people, the more uncomfortable I became with the wielding of the words ‘lived experience’ and ‘community member’.
Like most people with lived experience I wanted to make change through my work, and as someone who was still relatively young when I started to pursue this goal, it was easy to follow the path that was being laid out in front of me. I was encouraged to speak up and out at events, policy meetings and funding spaces, but there was never any consideration for the weight of doing such work. No conversations of aftercare or understanding of the impact of sharing and re-sharing traumatic experiences over and over. Often my identity or the experiences I was sharing were not respected, and more than once I was subject to ‘polite’ discrimination which was just discrimination repackaged with a pretty bow.
My colleagues went back to their desks or switched off their computers, but for me there was no possibility of turning my gaze away. The work was in my life and my life was in the work. With the expectation of sharing and drawing on my lived experience in spaces that were far from safe, distress became a daily occurrence, an almost permanent feature of the workplace. There were no policies that considered the impact of sharing lived experience, no supportive processes in place; just an empty silence after the ‘job’ was complete, and the expectation that we would go again tomorrow.
As time went on, my lived experience felt more and more like a caricature that they could wheel out for show, whilst non-Travellers continued to dominate the conversations on proposed solutions. I carried a weight that my colleagues didn’t and I brought an experience to the table that ‘added value’, but whilst my lived experience might have brought money into the organisation in allowing them to tick the box of involvement, it wasn’t seen as worthy of monetary recognition. We often compensate workers for their technical skills and knowledge, but lived experienced is never valued in the same way.
I entered into the GRT sector as someone who had lived experience of discrimination and marginalisation, but I was also a professional in my own right with a degree and more than five years of experience working in education and youth engagement under my belt. However, the lived experience opportunities that are often presented can be tokenistic and fail to recognise the breadth of experience that those with lived experience bring with them. Where conversations around representation were taking place with gusto in other sectors, they were lagging behind in this space, where there were no conversations about power imbalances and the pervasiveness of anti-Traveller attitudes or sentiments in the sector, even when coming from a well-meaning place. When you try to push back and challenge these attitudes, you are met with resistance, and find that the language of liberation is co-opted whilst the tactics of oppression continue.
Irish Travellers have some of the poorest health outcomes in this country, with high rates of people taking their own lives, lower levels of life expectancy and an ongoing history of discrimination at the hands of the state and its actors. When you grow up in the shadow of suicide, you understand just how fragile and important life is, and you understand even more the urgency of creating a more just world. Action becomes a necessity and not just a nice-to-have. But this shouldn’t mean that you aren’t held in a culture of care. There needs to be a radical shift in how we value lived experience, including paying fairly for the expertise, ensuring that it isn’t taking place in a culture of extraction, and providing better care and support. Your mental health shouldn’t suffer as a result of sharing your lived experience, but in that space I constantly saw Romany, Roma and Irish Traveller activists and organisers burning out and being traumatised or re-traumatised in the process. There are some organisations that are getting it right: making sure that their work is co-produced with communities, ensuring that undue burdens are not placed on staff with lived experience and informing their policy advocacy with on-the-ground support work, but this needs to become the norm rather than the exception. There needs to be a greater understanding of the impact that re-sharing traumatic experiences has on those with lived experience and better supportive practices in place for those who experience discrimination in the course of their work. Lived experience is vital in building a better world for those who experience oppression and marginalisation to ensure that our voices are at the centre of change, but there needs to be a revaluation of how we understand, support and value it.
The Limitations of Lived Experience
This blog is part of our “The Limitations of Lived Experience” series which was open for submissions from NSUN members in January 2025 and published from February 2025. All the blogs in the series are available here.