Recently I attended three events connected with lived-experience-led research, Mad Studies, and survivor movements: two gatherings over food at York University's Mad Studies Hub, and a support group organized by the UK's SRN, the Survivor Researcher Network. Many of those taking part identified as survivors, peer support workers, or mad scholars.

A brief introduction to these two spaces: SRN is a UK research network led by survivors of mental-health services. Its concern is service user / survivor-led research: research participated in, initiated, critiqued, and carried out by people who have experienced distress, mental-health services, or the psychiatric system. York University's Mad Studies Hub is a university research centre rooted in Mad Studies and critical mental health. It emphasizes experiential knowledge, the relationship between mental health and oppression, and research, policy, and practice oriented towards social justice.

I arrived with questions of my own. Could "qinlizhe research" in Chinese-speaking contexts avoid being co-opted quite so quickly? When a name, an orientation, a community has barely begun to grow its own trunk before professionals, institutions, hospitals, and academic projects start pruning and using it, what can we do? I wanted to see whether people elsewhere, with longer histories behind them, had really solved these problems.

My strongest impression afterwards: they hadn't.

At a distance, through texts, it's easy to imagine Euro-American survivor movements, Mad Studies, and lived-experience research as some mature version of what we're working towards, as if people there already have complete organizations, theories, ethics, and institutional protections. It's also easy to cast others as "survivor experts": if they're from the English-speaking world, if their movements have longer histories, their words somehow seem naturally more advanced, more wise than ours.

Entering these spaces, I didn't encounter a finished answer. I encountered people still struggling and negotiating. Of course they have longer histories, and more organizations, journals, resources, and language available to them. But their problems haven't disappeared. Co-option is still happening. So is labour exploitation. So is tokenistic participation. Their difficulties are, of course, in some ways more specific and complicated than ours. We may still be facing the question of how to bring something into existence; they are facing what happens when a movement that did come into existence is steadily weakened by institutionalization, professionalization, and dwindling resources.

Only by being physically present in these spaces can you feel that these experiences aren't cases sitting in papers, or templates ready to transplant. They're living encounters: someone jokes, someone stays silent, someone cautiously says, "I'm not an academic." Someone describes being used by an institution. Someone asks about payment and welfare arrangements. Someone worries that digital tools will exclude older and disabled people. Someone keeps reminding everyone not to take people's personal information outside the meeting.

These details gave me a more concrete sense of Mad Studies and survivor research than empty repetition of the concepts ever could. Here are a few things I noticed.

The first surprise was that participants in both kinds of events still felt support was limited, even though they were in Europe or North America. A PhD student from the US said nobody around them had heard of Mad Studies. A UK scholar wanted somewhere to find out what was happening in survivor research: the field seemed to have weakened, and there wasn't much discussion of it around them anymore. So this work isn't only marginal in China. Even in places with histories of Mad Pride and survivor movements, it isn't powerful. There are papers, books, and organizations, certainly, but its influence remains limited compared with other traditions of research.

The second thing that stayed with me was payment for experiential labour. At the UK meeting, someone said people should have a choice about whether they receive payment. Welfare rules, disability benefits, tax arrangements, or status can make some people afraid to accept it. But institutions mustn't use that as an excuse not to pay. The question is whether the system recognizes qinlizhe labour as labour without turning payment into a new punishment.

Towards the end of a Mad Studies gathering, the host said that people often shared useful links in conversation, and it would be good to bring them together. Someone suggested a shared spreadsheet. The host pointed out that her pay and contracted hours were limited: she couldn't maintain it indefinitely. Would it become another student's or research assistant's extra labour? Of course it would be good if someone wanted to do it, but she also wanted to flag the boundaries of the work. Yes: resource collections don't exist by themselves. When this labour goes unrecognized, "collective knowledge" can rest on particular people's invisible work.

The third detail concerned a specific tool: body mapping. It helps people express experience through the body. Broadly, different questions are placed at different parts of a life-size human outline. Around the eyes: what is your vision? What drives you to act? Around the stomach: what makes you frightened, angry, happy, sad? At the heart: what do you love in your life? At the shoulders: what do you feel responsible for?

People can express themselves within limits they define as safe. The approach is holistic, making room for past, present, and future, and culturally sensitive. It can help people whose first language isn't English, and supports visual and non-verbal expression. It can reduce the need to retell traumatic stories: people can use a body map to tell a story once, record it on video, and then choose whether to share it with others or with services.

The SRN presenter wanted to turn the tool into an app. Immediately, people asked: would digitization exclude older people? What about people unfamiliar with technology? Others asked whether this material would really find its way into services. Would it end up like other tools, something performed for appearances while staff still wouldn't look at it? I was struck by how quickly these questions arose. In some more professionally oriented training settings I've encountered, people seem to think a new tool is magic. A tool is just a tool. It has its uses and its limits. Yet perhaps because these tools often involve artistic expression, their effects are frequently exaggerated or romanticized.

The fourth detail was very personal. At the survivor meeting, many participants were older, but comfortable using online meeting software, and had been committed to survivor movements for a long time. That also brought older people's perspectives into the discussion. The concern about whether the app would exclude older people, for instance, came from an older woman at the meeting. I found that moving. It was something I hadn't encountered in my previous experience.

Qinlizhe organizing in China needs particular vigilance. Before we've really formed a strong collective subject defined by qinlizhe ourselves, we're already surrounded by safer, more institutionally acceptable language: "medical humanities," "psychological science communication," "social-work innovation," "patient involvement," "co-created services," "narrative medicine." None of these is necessarily bad. Many participants and professionals may be sincere. But sincerity doesn't mean power has been redistributed. I'm not saying qinlizhe organizing in China should reject every collaboration. I'm saying independent space is scarce: professionals control venues, funding, legitimacy, and safer routes through the system. Some things seem only able to begin through them. But we must remember: beginning through them doesn't mean being defined by them.

The events felt to me like a kind of prophecy. Not a prophecy of how mature we would one day become, but a reminder that practice is always unsettled, always being negotiated.

As a qinlizhe from China, I don't think the immediate task is to rush to prove that we too have research grounded in first-hand experience, or to hurry ourselves into a framework international academia can understand. It's to ask:

  • What do we actually want to say?
  • What do we want to preserve?
  • What do we refuse?
  • Where are the limits of collaboration?
  • Are there things we can never say in front of certain collaborators?

I'll keep taking part, witnessing the hesitation, unease, and pulling in different directions, and bringing back first-hand accounts.