It’s time for a multi-dimensional view of lived experience
By Aruna Raman, Mental health educator, facilitator, communicator and expert by experience. This blog is an edited version of a piece originally shared on Aruna’s Linkedin, which you can read in full here.
In the field of mental health, very few stakeholders, if any, present content with heft, intellectual credibility and a multi-dimensional view of lived experience, let alone including people with lived experience as, quite simply, people.
While the inclusion of "experts by experience" in mental health/illness narrative is almost like a rite of passage in the mental health discourse world, too often organisations, after shining the light on those with lived experience, don't quite know what to do with us.
This is what I notice about those who champion inclusion of lived experience narratives, without going too far with it:
(a) People are only too ready to jump to our defence, when they sense that our experiences are being misrepresented. "People with anxiety and depression don't sit in dark rooms with their heads in their hands. Why can't they be portrayed as being more cheerful? The media is doing them great injustice," says a well-meaning professional acquaintance. Well, guess what? I have those "head-in-hands and wanting to sit in a dark room" days. I discern that there is a delicate balance in mental health story-building, but we should let the people with lived experience make that decision.
(b) I am tired of the one-dimensional rendering of people with mental illnesses as victims. There is polarisation in how our stories are shared - either we are victims or heroes, with one state fuelling the other. Why can't we be people with quirks, with our mental illnesses coexisting with the rest of our other selves and identities? Why is the dominant narrative either of victimisation, or heroism?
(c) There is another sharp furrow in mental health narratives, between the colonial model - biomedical, with an emphasis on medication and institutionalisation, and the decolonial, psychosocial, community-integrated model. It is as if these are two definitive pillars, with no possibility of the complex and richness that intermingling bestows.
(d) Another often used phrase is in the call for interventions to be "localised." A lot of medical terms are lost in vernacular translation. For example, the word "anxiety" translates into "chinta," "chinte," or "kavalai" in Hindi, Kannada, and Tamil respectively, three of the 23 official Indian languages. These words don't capture the nuances of the word "anxiety." Theories (as far as I know) haven't really been translated into vernacular languages, because, I argue, people who speak these languages, perhaps might not need a theory to explain how to experience grief. So, while it is all very well to adhere to the local, the complexities of the local context run deep.
So, how can we do this right? How can people with lived experience find gravitas, relevance and respect in mental health narratives? Here are some of my thoughts:
(a) We can tell our own stories. While we appreciate that you are supporting us by carrying our stories, you can fight our fight alongside us, not for us. Let people with lived experience become the focal points of your discussions. They might carry very different visuals of what it means to live with a mental illness, and would not want those visuals to be diminished. Speak with them, and not for them.
(b) People with mental illnesses are also people. Many of us don't straddle the victim/hero dichotomy. We approach our illnesses with different lenses, at different points in our journeys. Ask us what our approaches are, instead of casting us in a set narrative. When showcasing lived experience, bring a multiplicity of perspectives to the table.
(c) Epistemic analysis of mental health (care) approaches is a luxury that some of us enjoy. I am an English-speaking, city-dwelling person of means with a white-collar avocation. I can take my own time to recover, take medication or not, seek refuge in spirituality, or parse the merits and demerits of biomedical vs. psychosocial. A daily wage earner might not have the time or space for debate. They might want to feel better now, while being accorded dignity and respect. So, intellectual divisions don't serve the practical world well. Make information available, but in the language and cadence of the person seeking information/treatment.
(d) I am guilty of this myself, but bringing theory and intellectuality to a non-English setting as one's dominant strategy might not be most effective. Whether you are a mental health professional, support person, scholar, or practitioner, follow the language of the community, as they understand mental health and illness. Perhaps they don't have use for lofty language. They just need resources, information, and community support.
In short, lived experience is not a one-dimensional checkbox to check. We lived experiencer-s are also diverse. Some of us want to share our stories, some approach the experience with precision science, some might not want to say anything at all. It is time to acknowledge and respect this.