Coming into focus

Mental health research depends on people who are deeply invested in the questions they ask, often because those questions are not abstract to them. Many of the researchers working in this field carry their own lived experience of mental health challenges. They have navigated the same systems they study, and they bring a depth of understanding to the work that no amount of academic training alone can produce.

Much of the time, that experience goes unacknowledged, unsupported, or quietly suppressed. The structures of academic life frequently ask researchers to set that investment aside and to perform a particular kind of objectivity. But what would become possible if research cultures made more room for the full lives of the people who produce knowledge?

Over the past three months, we've been sharing small glimpses of the Our Lived Experience in Navigating Science (LENS) Matters project across our social media platforms, inviting people to engage with the work through our survey and through the project's newly emerging Learning Collective. In this piece, we want to properly introduce what LENS actually is. This piece will be the first in a series we will be publishing here as the work unfolds over the next two years.

What the project is

Our LENS Matters brings together a Learning Collective of mental health researchers and practitioners in South Africa who have their own lived experience of mental health challenges, and who navigate the question of whether, and how, to bring that experience into their work.

Members come together for an in-person storytelling workshop and a series of methods labs, structured as spaces to work through what it means to navigate research environments while living with mental health challenges and to engage critically with participatory and decolonial approaches to research. Building on that shared learning, members then co-design and implement their own small learning projects, each one an attempt to explore how lived experience can be more meaningfully integrated into a specific research context.

Through all of this, the project aims to build something that does not yet fully exist in South Africa: a caring and inclusive community of researchers with lived experience who can support one another and collectively examine what it would take to transform the conditions in which we work.

The project is funded through the Wellcome Lived Experience Innovation Fund, alongside a cohort of other projects exploring lived experience in mental health science. Some of what we learn will come from working across that cohort.

Why here

Mental health in South Africa is inseparable from the histories that shaped it. The legacies of colonialism and apartheid, including racialised violence, forced displacement, and the systematic destruction of communities and family structures, are deeply present in how people experience distress today, in what resources are available to them, and in who gets to define what mental health means and how it should be researched.

Mental health services remain inaccessible to the majority of South Africans. Many people navigate their struggles through plural systems of healing, traditional healers, spiritual leaders, family networks, and community elders, that reflect understandings of distress as relational, communal, and context-specific. Yet dominant research frameworks have continued to privilege Eurocentric, biomedical models, marginalising the knowledge systems that many South Africans actually live by.

For researchers working in this landscape, particularly those who carry their own lived experience of mental health challenges, these conditions are not abstract. They shape the questions researchers ask, the frameworks available to them, the institutions they work within, and the costs of being honest about who they are and what they have been through.

What we want to learn

To help shape the questions we’ll explore together, we’re building a Learning Agenda as a shared starting point for what we're trying to understand and how we'll go about learning it. As we run storytelling workshops, methods labs, and learning projects, and as we keep talking across the different parts of this work, what we pick up along the way will keep reshaping the agenda.

The agenda is organised around three interconnected areas: the Science, the Researcher, and the System. Each is a different angle on the same underlying question, and each will keep shifting as the project moves over the coming months.

The Science: Lived Experience as a Research Lens. How does carrying lived experience shape the research itself? The questions asked, the methods chosen, the way findings get read?

The Researcher: Researcher Journeys, Identity & Disclosure. How do researchers make sense of their own identity alongside their research role, and how do they navigate decisions about disclosure?

The System: Institutional, Structural & Ecosystem Conditions. What institutional and structural things make lived-experience-led research safer, or harder, and where are the real chances to shift things?

No single one of these tells the whole story on its own, but together, they start to.

The team, in their own words

We asked members of the team why they joined this project and what they hope it makes possible.

Angelique Thomas (co-lead, community, co-learning and methodologies):

I joined this project because, over the last few years, I have increasingly felt the absence of safer ways to be a researcher who carries the kind of experience this project is about. Our LENS Matters excites me because it refuses the premise that being a rigorous researcher and carrying lived experience are in tension. It starts from the place that what researchers carry is not a liability to be managed but a form of knowledge the field has been losing. What we are working toward is a research environment in South Africa where researchers with lived experience can draw on both their experiential and academic knowledge without having to choose between them, and where that dual knowledge makes the science richer.

Dr Lindsey Reynolds (co-lead community, co-learning, and strategic oversight):

For as long as I have been doing research, I have been uneasy about the line it draws between "researchers" and "the people we study," as if knowledge is produced only by people who stand entirely outside the experiences, systems, and struggles they are trying to understand. I have circled that question for years, through work on community engagement, participation, ethics, and the politics of knowledge production. Our LENS Matters turns it back on us, on the often-unspoken ways researchers' own lives shape the work we do. It also asks something of me that I have approached more cautiously: what it means to bring more of my own experience into the questions I ask about research, care, power and knowledge.

Dr Sharli Paphitis (co-lead, mental health science and epistemic justice)

So much of my work has been shaped by questions of epistemic justice, and by what happens when people are expected to separate their lived experience from their scientific contribution. My own research has always been shaped by lived experience, but I also know that this is not always safe or straightforward. For me, this project is an opportunity to think more honestly about what lived experience science asks of researchers, what it makes possible, and what kinds of research cultures are needed for people to draw on their knowledge and expertise without having to put themselves at risk.

Prof. Laila Asmal (co-lead, mental health science and clinical research)

I joined this collective because my work with colleagues, patients, and research participants has shown me that the line between 'academic' and person with 'lived experience' is often not clear or dichotomous. When we force people to choose one identity, we lose part of the story. When we make scientists disavow their mental health histories, we risk deepening stigma and losing the chance to do better science

Marguerite du Toit (researcher, lived experience and knowledge translation)

I have wrestled with one particular question for some time: What does it mean to voice your inner experience for the clinical gaze? Following on from this: Have my investments into careful externalisations of complex inner states made a difference to my treatment outcomes over the years? I’m very interested in the possibility of articulating phenomena that existing clinical concepts might struggle to capture, and the potential of rendering them ‘visible’ enough to become objects of research. The chance to be part of a community where I get to explore these types of questions is golden.

Phelisa Sikwata (project coordinator and inclusive facilitator)

My mental health lived experience has always translated in my work from a point of spirituality and empathy, an understanding of self and positioning that was not academically or medically diagnosed nor defined. There is beauty in that embrace, yet I have always been curious: why do I think the way I do, why do I need more space and support in how I move and understand my surroundings, and are there other people who feel like I do. And beyond work, LENS has promised me vast learnings, like getting to work with team members who understand and tend to mental health differently, where I get to adopt language to better navigate my own lived experience, and better yet be in community with what I imagine will be a wonderful group of people.

Dr Hilmar Luckhoff (senior researcher, clinical and intersectional perspectives)

I joined the Our LENS Matters project because it combines my roles as a clinician-researcher and a person with lived experience of psychosis. I am excited by its commitment to genuine knowledge co-production, and by the opportunity to help create more inclusive, relevant and impactful mental health research through lived experience.

If you are a mental health researcher in South Africa with lived experience of mental health challenges, we would love to hear from you. https://www.pivotcollective.org/projects/lens-matters/get-involved

Our LENS Matters is led by Pivot Collective in partnership with Stellenbosch University. We are also working with McPin Foundation, The Banyan Academy of Leadership in Mental Health, United for Global Mental Health, and Cape Mental Health as partners in the Learning Network. The project is funded by Wellcome through the Lived Experience Innovation Fund.