Young People’s Mental Health, Lived Experience and Alternate Knowledge

At the Weaving Our Voices conference earlier this year, I met a group of young authors talking about their mental health struggles and needs, and most importantly, the ways in which they coped with these challenges.

These 14 young people are co-authors of a book titled ‘Jugaad- A Little Book of Know-Hows From Young People About Mental Health.’ Curated by Yashna Vishwanathan and Raviraj Shetty of the Ummeed Child Development Center, a not-for-profit working in Mumbai, India, this book hopes to be a ‘document that can inform our practices in schools, communities, and mental health setups that help us create respectful ways of co-existing.’

‘Jugaad’ is a Hindi word used to describe the creative ways in which limited resources are used to solve problems (‘life-hacks’ as the Jugaad team likes to call them). This book is a compilation of all these jugaads that the authors use to respond to their everyday mental health challenges. Most of these jugaads do not find a mention in the literature of the ‘experts’ necessarily, but are unique to their lived experiences and thus, more accessible to young people.

It was a conscious decision taken by the authors to make this resource free for accessibility purposes. You can request your copy by writing to them on their Instagram handle.

In this interview, I talk to the team about this interesting project, the visual appeal of the book and the importance of listening to and foregrounding all our jugaads.

Authors of ‘Jugaad’

Adishi Gupta: How did the idea of a book like ‘Jugaad’ come about? What were some of your objectives in creating it? 

Jugaad started with Ummeed’s collaboration with the Sangath initiative, It’s Ok to Talk, wherein I was a part of this amazing group of youth advocates and we were all training to take up youth community initiatives. Back at Ummeed, we were thinking of what this community mental health project could look like, and Raviraj (who’s the co-curator of the book) and I were toying with many ideas.

Ummeed’s mental health team uses narrative ideas and practices to respond to young people and their families experiencing distress. We have also been forever-excited co-travellers in young people’s journeys of navigating through a not-so-just world using their know-how, ingenuity and a very prudent understanding of what they want in their world.

We then thought of how valuable it would be if all this knowledge from them, as experts on mental health, could be put into a little book.

In the space of mental health, a lot of information is top-down, coming from academia and professionals to the users. And this knowledge is often shaped by dominant understandings of ableism, gender, caste, class, sexuality and disability. With this book, we intended to invite young people from diverse contexts to lend their know-how of what mental health looks like to them, jugaads they use to take care of their own and one another’s mental health. This way, we hoped to put together a body of alternate knowledge on mental health.

Adishi Gupta: When I first read the book, I couldn’t help but wonder what it would have been like to read something like this when I was younger and dealing with a lot of similar problems by myself. How important is it for young people’s stories to come to light, especially considering the fact that their problems are constantly dismissed and minimised by adults, thus isolating them all the more?  

The ideas and discourses that surround children and young people are so omnipresent yet invisible, which marginalises children in many ways. More so, with children experiencing disability. Ideas that children with disability ‘may not make it too far vis-a-vis careers’ or that children need to be told what to do, how to be, and that they can’t navigate their problems, are all around us.

However, all along, they have been doing ‘little-big’ things to respond to problems in ways that tell us about their hopes and dreams. It is important for us as adults or ‘experts’ — therapists, community workers, caregivers — to be witness to these skills and know-hows children use in their journey, because oppressive power structures will not allow us to do this inquiry.

In the very same way, there are also discourses around caregiving that pits children and caregivers against one another. Ideas around what a caregiver should be like, what they should be prioritising, how caregiving should be performed, how caregiving for children with disabilities should be. A lot of these ideas revolve around blame instead of love, care, and actions that nourish their relationships.

Jugaad is then an intentional inquiry into young peoples’ and their caregivers’ stories of skills, know-hows, their jugaads to navigate exclusionary worlds, their audacious hopes and the values they hold on to in their lives.

Michael White called this ‘insider’ wisdom, the subjugated knowledge of something that holds many kinds of knowledge about the world that haven’t been visible before. It enables us to envisage a different future and the many possibilities and alternative identities of these young people as agents of change.

Adishi Gupta: What was the experience of bringing together a group of 14 young people to talk about mental health? How did you go about it?

We reached out to young people who we thought, firstly, would be interested to be a part of the group — young people who access services at Ummeed. We also released a fun invite and sent them to our partner organisations, putting it up on social media. The flyer read like this, ‘The content of the book will be created and sanctioned by the group of the young authors themselves and would need no other sanctioning.’

Some young people expressed immediate interest to come in as authors, while with others, there was some reluctance. We came in with a genuine interest in knowing about mental health from young people’s lived-experiences, and not testing/generating awareness or capitalising on their diversities. We always worked with an ardent assumption that these young people are indeed experts of their circumstances and they use jugaads all the time to take care of themselves and the communities around them.

Adishi Gupta: It is interesting how the stories of these young people are intersectional in terms of gender, caste, class, neurodiversity and disability. Tell us how you chose your group. What role do you think these factors played in shaping the book? 

There was intentional recruitment of young authors who experience marginalisation and have seldom or never had the chance to share first-person accounts of their experiences. We were also conscious that the narrative around their identity is constructed by able-bodied, neurotypical, cis, upper-caste and upper-class individuals, and this goes on to become singular, totalising labels. Thus, we were very clear about inviting individuals and reaching out to organisations that work towards visbilizing marginalised voices.

The voices of the young people who were recruited were really instrumental in shaping the book in the way it is. Their powerful, honest voices make the book warm, raw, relatable and unapologetic, and make it a book that stands for diversity, inclusion and queerness. And I think, when their voices are at the centre to inform understanding around mental health, it also creates a narrative about them as people with resources to respond to everyday challenges.

Adishi Gupta: The illustrations by Ananya Broker Parekh and the general layout of the book are instantly appealing and deserve a special mention. What role did the illustrations play in how the authors wanted their stories to be portrayed?

I would let Ananya answer that since she’s been so instrumental in shaping Jugaad into what it is — visually and in many other aspects. Her meticulous and genuine investment in the project made it what it is today.

Ananya: As an illustrator, it’s rare to come across a project where you work with, instead of work for. Listening to and observing the young people through their discussions made me feel responsible about telling their stories so that I was communicating who they were, not my interpretation of them. To do this, I framed a few questions to get to know them and their interests. Then I drew them and after I made that drawing, I shared it with them to see if the drawing represented them. That interaction turned out to be fun, with suggestions like, “Can you make me wear more pink? Because I love it,” or “Can you make my skin a little more brown?”

Later, when we thought about a metaphor that mirrored the process and the theme, we saw it as a patchwork; each piece independent of one another, stitched together by a common thread, and that’s how Jugaad came to be visualised.

Adishi Gupta: What are your hopes for ‘Jugaad’? Where do you see it going? Do you have a follow up planned or a series of any sort?

It’s been lovely to see Jugaad reaching so many places across the country and people reaching out to us just to say how it’s touched them, how it’s simple yet profound, how it makes mental health accessible and conversations about it can look warm. We have tried to keep the conversation going through our Instagram page @mentalhealthjugaad, where people let us know what they thought of the book and send their sewn patch of ‘jugaad’ they use to take care of mental health. It’s amazing to see our community growing and conversations being constructed around mental health as people having the agency to respond to distress.

All of us as clinicians and therapists at Ummeed have been sharing Jugaad copies with the young people we meet in our sessions and it brings in them a sense of community and solidarity with the stories of jugaadus in the book. We have also shared the Jugaad model with many professionals and communities and they’ve expressed their interest to take this conversation further in their context with young people.

For instance, a doctor working in palliative care told me that she would be thrilled to know some of the young people’s know-how to manage terminal illnesses. The young authors have also been thrilled to take the Jugaad conversation forward in their colleges, neighbourhoods and communities, and it’s different when they do it because their peers see a similar-aged young person talking about mental health, as opposed to an ‘expert’.

We have also been working on Hindi translations for Jugaad, which will be out soon, and we hope to do translations in other languages too. That would be something really exciting and important for us.

Adishi Gupta: What has been people’s response to the book? Have any young people reached out to you about how it spoke to them? 

I think for young people, especially who experience developmental and psychosocial disabilities, this is probably one of the few materials that brings to them a different narrative about themselves; narratives that aren’t only about the problems they’re experiencing but also how they can use some unpopular ‘jugaads’ to navigate through these problems.

I particularly remember a young college-going person reaching out to me and telling me how he’s been experiencing a sense of isolation and how his copy of Jugaad has made him feel that there’s a community out there which hopes for the same things as he does. We have had young people and caregivers reach out to us to just say that how ‘crying’ or ‘taking naps’ or ‘reaching out’ can be ways to take care of oneself rather than the so-called capitalistic and productive ways that are often prescribed.

Adishi Gupta: The dominant narrative about young people is that they need to be told what is good for them. But projects like ‘Jugaad’ are a testament to how adept they can be at understanding and dealing with their problems, and can, in turn, be great teachers. What would you say has been your biggest learning working on this book with this group of young authors?

It’s been a really powerful experience for me to have been a part of this project, and powerful in ways that challenged, deconstructed and sometimes toppled the internalised understandings of mental health I was trained into.

One of the most powerful and hard-hitting realisations for me was about how structures around us keep influencing our mental health in our everyday lives; how most structures around us are ableist or capitalist, or how social locations determine access over resources, or the exclusion that comes with pinning supremacy of the English language.

I remember this one particular story Sanket was sharing about his classroom which was on the top floor and how his father had to carry him up the stairs along with his wheelchair. It brought to Sanket feelings of fear, uncertainty and sadness for himself and his father. And other instances like having to stay back alone in the class during the recreation period as a 7/8-year-old and not being able to have anything around to engage himself with for 45 minutes, while feeling alone. These exclusionary practices that impact a person’s sense of control over one’s day and one’s life can impact one’s mental health.

So as a mental health worker, I have taken some of these practices from Jugaad to my work outside of therapy rooms and influencing these spaces: their homes, neighbourhoods, schools and larger communities. When the larger community and I are able to meet some of these young people outside of what is bringing problems into their lives, we come to know them as these amazing, resourceful beings who know exactly the kind of life they hope for.

Adishi Gupta: Is there anything else you’d like to tell the readers of Mad in Asia Pacific?

The young people of Jugaad are trying to speak to us and inform us of a radical world which is possible and is taking shape right at this moment through documents like these. And as the team of Ummeed, which has been really fortunate to witness this journey with them, we do hope that we keep love, trust, interdependency and respect as values of care work, and strive to create such spaces for our community.

To keep asking ourselves, “What can we keep learning from these young people’s experiences? What might be some little-big things we start doing in our own spaces and communities to support them? What might it take for us to come together and re-imagine a world that takes care of all of us?”

Adishi Gupta is a writer, editor and educator who is often found hiding behind books. She is passionate about issues related to gender, mental health and our rather complex emotional worlds. She is the founder of Letters of Kindness and the co-founder of Mental Health Talks India.

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