In-depth Interviews – The Good Story Project

Today, on World Diabetes Day, you may want to read this interview

As per the Indian Council of Medical Research’s September 2022 report, India is home to 77 million diabetics, the second highest in the world. Yet, the unfortunate truth is, we know very little about it. This, according to Jazz Sethi, 26, founder and director of The Diabesties Foundation, is because we tend to generalise diabetes. In this interview with The Good Story Project’s Swati Subhedar, Sethi, a Type 1 Diabetic (T1D), elaborates on how those living with diabetes, especially T1D, often struggle to deal with the endocrinological, physical, physiological, emotional, mental, psychological, and financial aspects that come along as package deal. We also touched upon a range of other topics, including the insulin monopoly, the need to educate individuals living with diabetes as well as their families and caregivers and provide them with multidimensional support, and the massive role organisations like hers are playing to fill in the gaps in our broken healthcare system until major policy level changes are implemented by the government.

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Jazz Sethi, a resident of Ahmedabad, was 13 when she was diagnosed with Type 1 Diabetes (T1D). She was a midfielder in her school football team, and they were practicing for an upcoming tournament. During that time, she complained of feeling excessively thirsty and was losing weight. It was assumed it was because of her gruelling schedule. She underwent a blood test. A few hours later, the doctors advised her parents to rush Sethi to the Intensive Care Unit (ICU). Her blood sugar was at 1050mg/dL (normal blood sugar for a teenager is in the range of 19-50mg/dL).

That report changed her life and from that day, her life revolved around constantly keeping a tab on her blood sugar and adopting many lifestyle changes. It took her a decade to make peace with T1D and she launched The Diabesties Foundation. The goal of the non-profit organisation that works for “awareness, advocacy and access” is to make “every person with Type 1 Diabetes feel heard, loved, supported and celebrated”.

In 2019, Sethi, a professional dancer, and daughter of former world billiards champion Geet Sethi and educator Kiran Bir Sethi, became the first person in the country to have a Do-It-Yourself Artificial Pancreas (DIYAP), a technology that has changed her life. She hopes it becomes a norm in the country.

In this interview, she decodes diabetes for all of us.

**Through her venture, The Diabesties Foundation, Sethi and her team are trying to educate people about Type 1 Diabetes. They are also working with people living below the poverty line**

If you have to explain T1D to a child or to a layman, how would you explain it?

It’s very important that people understand what insulin is and the role it plays. But it’s not easy to explain it to children or those who don’t have access to education. This is how I explain it to them. One needs petrol to drive a car. The petrol of our body is glucose that we get from the food we eat. It enters our blood stream – so, blood stream is the road that our car takes. When we reach our destination, we need keys to enter our homes. That key is insulin, which is produced in the pancreas. It opens the blood stream and helps the entry of glucose (energy) in our muscles. In the case of people living with T1D, our body does not produce any insulin, so we have to take it from the outside. Managing T1D is a beautiful game of balance. How much food you need to eat, how much insulin you need to take, how much exercise you need to do, your carb count – it’s all a game of balance.

One of the missions of your foundation is to address the wide gap in the healthcare system. What are the steps you are taking?

You need time to understand the nitty-gritty of any chronic condition, including diabetes. You live with diabetes for the rest of your life. In the case of T1D, you have to unlearn what you know about life and then re-learn in order to incorporate this condition into your life. It’s very complex. In India, we have an overburdened healthcare system. Doctors are not able to spend a lot of time with persons with T1D. It’s not just about prescribing insulin or setting the dose; the doctors need to guide them about the changes in their diet and give proper counselling not just to the person/child who has been diagnosed with T1D, but also to their families and caregivers. In India, we don’t have this kind of support system. We are trying to bridge this gap. The first step is to recognise that we have a broken system and to try and understand why it is broken. We must not blame the doctors. With 100 patients in the waiting room, they can’t spend one hour with each patient. That’s when we step in. We answer all the questions people may have and give them mental and emotional support. It is important to tell them that they are not alone because living with T1D is a difficult life to live.

**On an average, a person ends up spending anywhere between Rs 5,000 and Rs 20,000 per month on insulin and that’s a lot for a middle or a lower-middle class family**

Talking about T1D, do we have any sort of data in India?

Unlike in the West, we don’t have a system wherein persons living with diabetes can register themselves. So, the numbers that we have are not official and the data is very conservative. As per the JDRF, the world’s largest non-profit funder of T1D research, in India, there are more than 902,172 ‘missing people’ and an average of 45 ‘healthy years lost’ to T1D per person, if diagnosed at age 10. (Missing people is the number of people who would still be alive today if they had not died early due to complications from T1D, and ‘healthy years lost’, represents time lost to ill health, disability, or early death from living with T1D). This is in addition to the persons who are already living with T1D.

On an average, how much does a person ends up spending on insulin every month?

It depends on the kind of insulin you are on, but one ends up spending anywhere between Rs 5,000 and Rs 20,000 a month. In the US, a vile of insulin will cost me Rs 2,700, and in India, I will get it for Rs 1,700. But if you look at the purchasing power, that’s a lot for middle or lower-middle class families here. And then there are those who are living below the poverty line and are diabetic. In India, we don’t have a strong public health system. Some government hospitals do provide free insulin, but it’s not a very sustainable and reliable solution. For instance, you will get insulin only if it’s in stock. Also, diabetes is not covered by insurance companies.

**“Diabetes is an umbrella term, but there are different types of diabetes and each has different pathologies and treatments. It’s always important to mention the TYPE of diabetes”**

There exists a monopoly across the world with three big pharma companies controlling the entire insulin market. In India, the price of insulin has gone up consistently in the past decade. What steps is the government taking to deal with the insulin monopoly and to control the rising prices?

The reason tackling high price of insulin is not a priority for the government is because insulin is already highly subsidised here. Ideally, it should be free, but because we don’t have any official data on the number of people living with T1D, it is difficult for the government to make this happen. Talking about insulin monopoly, dealing with issues like this requires sweeping policy-level changes. We don’t have any sustainable action plan. The government needs to understand that the cost of not doing anything is going to be far greater than the cost of doing something. If you don’t give persons living with T1D the basic standard of care (SOC), lot many people will have complications and they are going to end up in hospitals and occupy beds. Organisations like ours are happy to step in until some policy-level changes happen, but parallely the government too has to do its bit. We are giving free insulins, but that’s not enough. Educating them is equally important. When I talk about access, it’s not just access to insulin, it’s also about access to education, counselling, and peer support.

What is the one thing the government must do as a first step to spread awareness about diabetes?

In India, we generalise diabetes and there is no awareness about the types of diabetes. The government should start by spreading awareness about the two main (Type 1 and Type 2) types of diabetes. If you look at any advert or any public messaging, it just says diabetes. That is where we falter right in the beginning because Type 1 and Type 2 are completely different, they have different physiologies, different pathologies, and different treatment options. The government needs to spread awareness about the specifics of the main two types of diabetes.

**The Diabesties Foundation organises Diameets across India. So, far it has organised 45 meets**

Many people dealing with T1D are also those for whom arranging two meals a day is the biggest challenge. How can we help that segment of society?

The most unfortunate reality is when arranging two meals a day is a challenge, what should your priority be — getting food on the table or getting insulin. In that case, the thing you require to live becomes something you have to think about. We work with a lot of children who are below the poverty line and their stories and struggles are a whole different league. They don’t have refrigerators at home so they can’t store insulin, the electricity fluctuates, they reuse the needles over and over again. We try to be the beacons of hope to such people.

Any chronic illness is anxiety-inducing, especially for those who don’t have access to education. How do we address the mental health needs of that segment of society?

In India, the poor hesitate to ask questions to doctors, and they are the ones who have millions of questions. Our team of educators answers all their questions and this helps reduce their anxiety. There have been times when these sessions have lasted for two hours. There have been times when I have had to explain the same topic every single week to the same person. And it’s ok. It takes time. It’s about teaching and re-teaching the same concept until it gets absorbed in the subconscious and becomes second nature. We also cater to caregivers. Because T1D is more prevalent in children, it’s the parent who is taking care of the child. We have mothers who are absolutely burnt out and our caregiver counsellors help them out. Our aim is to help every stakeholder in this family by giving them adequate importance, support, and assurance that they are not alone. Also, language matters. We never say suffering from diabetes, we say people living with diabetes. We have our educational material translated into different regional languages so that it reaches more and more people.

The Diabestes Foundation |Contact: 9157721309 | Email: contact@d1abesties.com

“The character of Jamlo came from an Aadhar picture and a picture of her on the road”

Says Samina Mishra, a filmmaker, children’s book author and teacher. She teaches film at the International Baccalaureate level, aiming to use the arts as a means of self-expression. Mishra is a Mass Communications graduate of Jamia Millia Islamia, and her interests lie in covering themes that revolve around childhood, growing up and identity. Her movie Happiness Class on Delhi schools’ happiness curriculum is doing the rounds of film festivals to great critical acclaim. Her goal has been to give primacy to kids’ voices in all that she does. She also has to her credit, many books including Nida Finds a Way, and The House on Gulmohar Avenue, a publicly available documentary film.

In this interview, Sangitha Krishnamurthi holds a conversation with Mishra, after having read Jamlo Walks – the hard-hitting picture book based on a true story of a 12-year-old girl who walked all the way from Telangana to Bastar in Chhattisgarh. Carrying her little bag of chillies, Jamlo covered a distance of 155 miles during the lockdown.

What drew you into writing for children?

I can’t deconstruct why I write for children. The closest I can get to is my visual training from film making and my mass communications background. I have been drawn to whimsy and the everyday experience of being a kid. How do we stay whimsical as we grow up is a question that intrigues me. So, a coalescing of these various strands of education and interests got me into writing for children.

The actual journey started with not being able to raise funds for a movie on Delhi. That is when I pitched Hina in the Old City to Tulika books. It is now available from Eklavya Books and is about a young girl and how life is in the streets of purani Dilli, featuring the neighbourhoods that I explored. Fiction came later.

What is different about writing for kids?

When I’m writing for children, I try to remember the child in me, what I was like as a child and children that I know and engage with. I write to convince myself, asking whether the child I remember being and the children I am now in touch with, would identify with the story. A lot has changed on the outside but the universality of feeling stays true. Is it an interesting story to tell? Is the book age appropriate in how it handles issues? Do the ideas talk to all children? These are some questions I ask myself and then, I take cues from kids.

Nida Finds a Way is a hole book with Duckbill – please talk about this one.

There isn’t enough representation in Indian children’s literature of Muslim kids doing regular everydayness, being playful and just being kids. There’s a texture to every neighbourhood and that’s true also of a largely Muslim neighbourhood. That is hard to find in English kid lit. The story of Nida and her super protective father and her wanting to learn to cycle on the roads was the initial idea. I sent it off to Duckbill and they asked me to write more to make it a whole (hole) book! The ending seemed logical, given the events of the time. It started as wanting the Muslim identity to be incidental but it became of consequence, and I wanted to show something beyond surface level diversity of topi, sewaiyan, food and festivals. There is a nuanced texture of language, just how we live our lives.

Jamlo Walks was the clincher for me. It is a deeply moving book and it moved me and continues to do so. Do talk a bit about how you found the story and what made you write this. How did you decide that a picture book would be the best representation of this story? Did you think of an audience for the book before you wrote it?

We were all locked away by the circumstances. I am a filmmaker; I need to be outside to see and speak to people. We saw these scenes shot at night, dark silhouettes, walking by the Yamuna, dragging footsteps. A young woman cycling a long distance, with her ailing father, men on railway tracks. The news and newspapers were full of these stories of survival and desperation.

Many people seemed to have missed Jamlo’s story; the PARI website was my main source and this idea of the contrast between the two kinds of children I saw. The book came in one go. I wrote it and then refined it. But because it was a short story, it took the form of a picture book. I don’t believe that picture books, are for younger children alone though that is how they are looked at, particularly in India. So, this was a question to consider – was the story appropriate for the readership? I think the book is good for say age group of nine plus though I know people who have read it with their younger children. This is a book that needs to be mediated by adults, answer any questions that are thrown up sensitively. So, we added a note to tackle these issues. Readers will digest the book and respond at different levels.

What was your brief to Tarique Aziz, the illustrator? Was there one?

This was a truly collaborative project, much like making a film. Smit, Devangana, Tarique and I talked about big ideas like representation as well as small details. We had a discussion on what kind of cloth the bag would be made of. The character of Jamlo came from an Aadhar picture and a picture of her on the road, one that showed determination and vulnerability. We talked a lot about the feel of the book, what should be in the foreground, there were many iterations of the text, paring it down to distill the story that came from this process of illustrating it. Using the milestone and the road to evoke the journey, for example, was something that evolved from the discussion.

Do you think children should have books that talk of ‘difficult’ topics? Why?

The lockdown was hard for everyone, especially children. So I wanted the book to work at creating possible connections – our own experience of difficulty can open us out to another’s difficulty – self-awareness versus making it a ‘scolding’, a moralising to create empathy for the ‘other’. I didn’t want the book to become the ‘wagging finger’. But I did want it to talk of the difficult experiences of the pandemic for all children.

We should be talking about all kinds of topics, without it being a fashionable or trendy thing to do. The point is not to ‘do a story about poverty’ but having a story to tell. There are many difficult topics – families and what happens in them, death, social issues. The pandemic exacerbated some of them. Many adults feel that children should not read sad stories, but sadness is also a part of life, it isn’t a negative thing, but what acclaimed author David Almond calls, sadness with a reaching for the light. There is a rich inner world of children and there’s got to be room for sharing that experience, if only for other children to know and relate to.

Even in Jamlo Walks, she looks at the birds in her sadness, reaching out. Ursula Le Guin, the renowned American author once said that the role of the writer is to be a witness and remind us of that which we have forgotten. For those of us who come from positions of privilege, this act of witnessing must be accompanied with self- interrogation, so things that are on the margins are not forgotten but are also presented, and not simply to display our sensitivity.

At a time when no one has been untouched, a true and very real story had to be immortalised for everyone to read and hopefully discuss.

Mishra recommends
Neil Gaiman – The Ocean at the End of the Lane
Jean-Pierre Simeon (Author), Olivier Tallec (Illustrator) – This is a Poem that Heals Fish
Anushka Ravishankar – Moin and the Monster
Siddharth Sarma – The Year of the Weeds
Angie Thomas – The Hate U Give
David Almond – My Dad’s a Birdman
Frank Cottrell Boyce – Framed
Jason Reynolds – When I was the Greatest
Arjun Talwar – Bim and the Town of Falling Fruit
Uma Krishnaswami – Book Uncle and Me
Other favourite international authors:
Jacqueline Woodson, Sharon Creech, Maurice Sendak, Shel Silverstein, Frances Hardinge

About the interviewer: Bangalore-based Sangitha Krishnamurthi is the co-founder of The Teachers Collective that works with schools, teachers and children inclusively. She is a wife and mother, who mostly tries to find a balance between being of use socially and making a livelihood at the same time. Reading is a long time passion which is now actively used as a way to motivate children to read. She uses kid lit and ‘story books’ in her reading classes to lure them into the amazing world of reading.

“It is tragic that people make elephants run like rats by throwing fireballs at them”

Between 2015 and 2019, 62 elephants were killed by trains in India and more than 1,700 people and more than 300 elephants died in encounters with each other. The human-elephant conflict is real, and, in most cases, humans are to be blamed for it. In the name of development and wanting more coal mines, factories, railway lines and wider highways, we have entered the homes of elephants and we blame them for coming out and destroying paddy fields and harming humans. In one of the chapters of her recently published book Wild and Wilful, Neha Sinha, conservation biologist and author, has documented many heart-breaking stories of elephants and their calves falling into mine pits, getting crushed under trains or sustaining burn injuries because of fireballs thrown at them. On this World Elephant Day, The Good Story Project co-founder Swati Subhedar interviews Neha Sinha to understand how deep-rooted the human-elephant conflict is and challenges of wildlife conservation.

In her book, which came out in February 2021, Sinha has documented stories of crisis involving iconic species found in India – the Indian leopard, the Asian elephant, the Bengal tiger, the great Indian bustard, the white-bellied heron, the amur falcon, the Ganges river dolphin, the king cobra, the tiger butterflies, the rhesus macaque monkeys, the rosy starlings and the magarmach – and how development has been and will continue to be a silent killer of these iconic species.

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The elephant is our national heritage animal, yet, today only about 27,000 wild elephants remain in India, as opposed to a million a decade ago. We have entered the homes of elephants in the name of development. How can we undo the damage already being done?

There is a lot of conflict between people and elephants in India. Other than the elephant conflict that happens in terms of people and elephants encountering each other and getting hurt, there is another kind of conflict. A lot of planning has been done in areas where elephants live and many mines, industries, factories, railway tracks and highways have come up in these areas which is detrimental to them. The elephants must walk to find food and water. But, with their habitat shrinking, they have to walk through and around the obstructions made in the name of development. This leads to disasters. Let me give you an example. In 2015, the elephants near Kaziranga in Assam encountered something novel – a wall meant for a township and a golf course. The wall was a part of the elephants’ walkway. For days, they made attempts to cross this barrier. Many photos emerged and in one of the pictures, a calf was seen trying to break the wall with his tiny head. The calf was later found dead next to the wall having suffered a haemorrhage.

In another instance, in 2019, villagers in Naxalbari in North Bengal tried to push off a herd of elephants from their paddy fields by throwing fireballs at them. Scared, the herd moved towards a railway line. The entire herd crossed the line, but a young calf could not as there was a steep incline. The calf scrambled down the slope and got hit by a train that came rushing towards it. His mother Ganga – an extremely loving and caring mother figure to the entire herd – died saving her child.

There have been many instances where elephants have sustained injuries or have died because of people chasing them with sticks or throwing firecrackers and fireballs at them to shoo them away. It’s tragic. The elephant is our national heritage animal, and we make them run like rats. They are very emotional animals. They have long memories, and they remember tragic incidents. They are also sharp enough to pass on this information to their young ones. The elephant chapter in the book is the longest one. It was difficult for me to write stories so full of tragedies.

**Ganga and her calf. Both were killed by a train in 2019. Image credit: Avijan Saha**

Last year, during the nationwide lockdown, there was outrage when an elephant died after consuming a cracker-filled pineapple. People could express their anger because the incident was reported. Many elephants die a silent death, and we don’t get to grieve for them. What should be done to keep the human-elephant conflict debate alive?

There was outrage because the elephant was also pregnant. We must understand that at any given point in time, a female elephant is either pregnant or is a caregiver. They have long pregnancies and because they are big animals, the young ones stay with their mothers for a few years. So, a female elephant dying is extremely tragic. It was terrible the way that pregnant elephant died after consuming the pineapple which was a bait bomb. People reacted the way they did was because everybody likes the idea of a mother and the mother being a caregiver.

People should understand that elephants are not trying to harm them. By entering their fields, all they are doing is trying to survive. They enter the fields because it’s easy nutrition for them and because their habitat has shrunk. There is no need to kill them or be so unkind to them. However, instead of merely saying that farmers should not harm them, we need to have a system in place. For any kind of conservation, we need political will as well as support from people. We need to take some hard decisions. To begin with, we cannot have more highways and coal mines in elephant areas.

**Author and conservation biologist Neha Sinha and her book**

Your book – Wild and Wilful – documents stories of conflicts involving some of the iconic species found in India and how they are on the verge of extinction. Tell us more about your book which you started writing during one of the gloomiest chapters of our lives – the pandemic-induced lockdown. How difficult was it to a write about wilderness while being confined to four walls of your home?

I did a lot of fieldwork for this book and started writing it in the end of 2019. I wanted to finish it by mid-2020 but the pandemic happened, and things became difficult. I wanted to visit many more places while writing this book, but that did not happen. I am a wildlife person and I need to be outside. It was tough writing this manuscript sitting at home!

This book is about the wild and I have been to deserts, mountains, rivers, woodlands, lakes and political capitals to bring you the stories of India’s wildest citizens, along with some remarkable people who share insights on, and their lives with, these animals. In the book I have written about the Indian Leopard, the Asian elephant, the Bengal tiger, the great Indian bustard, the white-bellied heron, the amur falcon, the Ganges river dolphin, the king cobra and the spectacled cobra, tiger butterflies, rhesus macaque monkeys, the rosy starlings and the magarmach or the Mugger crocodile. The book loosely follows the structure of Earth, Sky, Water and Heart. It is divided further into the places where the animals are found. Under ‘Earth’, we have political capitals, deserts, woodlands and forest, under ‘Sky’, we have birds and butterflies that spend days migrating between countries or states. Under ‘Water’, we have ponds and rivers. Under Heart, we have urban jungles, the places many of us live in.

**A leopard seen in a tea garden in North Bengal. Image credit: Avijan Saha**

Which chapter of your book is your favourite and why?

The elephant chapter is the closest to my heart as I felt very emotional while writing it. However, I also like the butterfly chapter. The butterflies are so whimsical and mysterious at the same time they are so beautiful and fragile. Their stories are so fascinating! For instance, the black and orange-coloured monarch butterflies, found in America, migrate not just over countries but continents! They start from Canada, avoiding the cold, and reach Mexico where they cover fir trees in millions. A single butterfly cannot complete this intercontinental journey. On the way southwards, the butterfly lays eggs, caterpillars emerge, and new butterflies are born. Hence, the butterflies that reach Mexico from Canada are third or fourth generation butterflies!

Which species mentioned in your book requires our immediate attention?

It would definitely be the great Indian bustard (GIB). There are about 100 remaining in India and that’s the entire global population. Over the years, their habitat has shrunk considerably. Earlier, they were found all over Central India, the Deccan Plateau, Maharashtra, Madhya Pradesh, and Uttar Pradesh. Now they and found only in Rajasthan and Gujarat. However, the solar and wind energy plants that have come up in the deserts of Rajasthan and Gujarat are the latest threat to them. The plants are not a problem, the real problem are the wires that carry the power to energy grids. The GIBs never evolved to dodge these wires. They are the heaviest flying birds on earth, so they lack the speed and manoeuvrability that other birds have. The Supreme Court has directed the governments of Gujarat and Rajasthan to lay high voltage power lines underground in the habitats of the bird to aid in its conservation efforts. We should have implemented this yesterday. We cannot afford to lose more GIBs. In 2019, a centre was set up in Rajasthan. Here, birds are hatched from eggs, chicks are raised, and ultimately, they all are released back into the wild. This is a good first step.

**The Great Indian Bustard. Image credit: Dhritiman Mukherjee**

India had 1.2 million snakebite deaths from 2000 to 2019. Hence, there is a tendency to attack and kill snakes. However, there is also a section that worships snakes. We have a similar love-hate relationship with elephants and monkeys. Does this make their conservation difficult?

Yes, we do have a bipolar perspective on many animals. We kill cobras, but we also kill the rat snakes, that are not even poisonous. We worship elephants and keep them in temples, which is incorrect. They are wild animals, and it takes years of beating before they become the way they are seen in temples. All this is done in the name of culture. However, culture should be progressive and not stuck in a time capsule. Having said that, there are genuine problems and conservation cannot happen if we ignore these problems. There is a reason why people kill snakes. So instead of blaming them, there is a need to create awareness. Just like the covid vaccine is not an option, having an antidote (drug, chelating substance, or a chemical that neutralizes the effects of another drug or a poison) available in places which have snake bite is not an option. However, at many primary health centres, these antidotes are either expired or not available. These problems need to be solved and not pushed under the carpet.

**A King cobra. Imamge credit: Jignasu Dolia**

We love discussing politics, current affairs, cricket or our Olympic wins over chai, coffee and drinks. However, grave issues like climate change, environment-related issues, human-animal conflicts and wildlife conservation are topics that don’t come up for discussion frequently. What should be done to change this?

A report released by the Intergovernmental Panel on Climate Change (IPCC) recently mentions that India may see more heatwaves, landslides, droughts, rainfall, cyclones and agricultural and ecological droughts. There has been an increase in extreme events like excessive rainfall in the Himalayas and frequent cyclones. We are going to suffer financial loss and loss of livelihood because of these extreme events. Climate change is going to affect all of us, and we must take it seriously. Henceforth, our development plans should not disregard climate change. We shouldn’t be blasting the mountains in the Himalayas to make roads. We are aware. Acceptance is not a problem, but lack of action is. We want to continue to function like we have been functioning. We are already experiencing climate change, but the government is pretending as if it does not know. We are still planning dams in the Himalayas even though every year people are dying because of floods and landslides. We need a greater citizen movement. Societal pressure will lead to the government acting. But for that to happen, people need to start talking and discussing.

**A mugger crocodile. Image credit: Neha Sinha**

How should we train our children so that they start taking issues like wildlife conservation and climate change seriously right from a young age?

This is a good time. There are a lot more eco clubs than there ever were before. People are using Apps to identify birds, plants and insects. People are reading a lot more and taking up conservation and wildlife as serious hobbies. As for the kids, they need to be taken outside. I can not stress this enough. It does not matter where — in the wilderness, deserts, forests, grasslands. Seeing is learning and nature is very interesting. Something is constantly happening. Our children need to touch the soil, they need to feel the texture of the leaves. If we get them to do this, half the battle is won.

**“Our children need to touch the soil, they need to feel the texture of the leaves”. Image credit: Swati Subhedar**

A million-dollar question. Can development and wildlife conservation go hand in hand?

Development is important. However, there has to be social and environmental conscience as well. If you are opening an industry that pollutes the water table, then find options for people living there and the wildlife. Don’t make things worse than they already are. There is lot of scope of sustainable development in India so we must start walking the talk now. We wanted to clean the Ganga and the Yamuna, but we have not managed to achieve that. The Ganga and Yamuna Action Plans are in place for years. We must act now. We must keep the eco-system intact. The more we disturb it, the more difficult life on earth is going to be.

Neha Sinha is an award-winning wildlife conservationist. She has studied biodiversity conservation at Oxford University, after winning an INLAKS scholarship, and works with the Bombay Natural History Society at present. She is also a noted columnist and has taught environmental politics at Delhi University. Wild animals are her favourite, followed closely by books.

“Before I became an adoptive parent myself, I theoretically knew that each child deserves a family who passionately loves and protects them”

Says Smriti Gupta, who is a child rights campaigner, and a partnerships and marketing professional. She is working to drive awareness and find lasting solutions for India’s most vulnerable children. In this interview with PRERNA SHAH, she talks about creating a Facebook group that supports Prospective Adoptive Parents (PAPs), how a family can prepare themselves prior to bringing home a child, as well as her campaign on Safe Surrender. Gupta also addresses several pertinent issues regarding adoption in India, including the lack of maternity leave for parents who bring home an older child.

You run a Facebook group that helps PAPs who are interested in adopting older children, siblings and children with special needs. How did that group come about and what sort of help are PAPs looking for when they sign up?

When I started engaging with Facebook groups related to adoption within India, I realised that the conversations is these groups were mostly geared towards adoption of younger children in the normal category. I wanted to create a space for PAPs to be able to discuss adoption of children with special needs (any age), normal category children above six years of age, and sibling groups. That’s how the Facebook group (India Adoption – Children with special needs, older children and siblings) came about.

PAPs in this group are looking for similar things that I have seen in other groups; only the children’s profiles are different. For example, PAPs are looking to understand how to care for a child with a certain special need, or how to prepare themselves for an older child adoption, or how to help siblings adjust, etc. Having an exclusive group really helps because you are getting answers from adoptive parents who have had similar experiences.

Are Indian PAPs opening up to adopting older children? Do you see a significant increase in parents opting for or considering adopting older children and children with special needs?

Yes, Indian PAPs are opening up to adopting older children, sibling groups, and children with special needs. I can’t say how significant the increase is since I don’t have the statistics around it but it’s very heartening to see PAPs opening up to a wide profile of children. International adoptions do play a significant role in the adoption of these children, and I am very thankful for that because every child deserves a family.

How does one define older children and what are the particular challenges that parents face when they bring home an older child? Or when they bring home siblings?

I think the definition varies on who you ask. There was a time when Indian government didn’t allow adoption of children over six years of age, so many people consider that as the cut off for defining older children. (By the way, now children can be adopted up to 18 years of age – a positive change in how India views adoption). I would personally define pre-teens and teens as an older child adoption, so over 10 years of age.

I don’t like the word ‘challenges’ when it comes to adoption. I would rather say what type of ‘preparation’ do PAPs need when they bring home an older child and an older group of siblings. I think the biggest preparation is accepting that it will take time to adjust and bond for the child as well as the parent. Also the child may require catch up time to match with his/her peer group both educationally and emotionally. Don’t get discouraged. Don’t rush things. Every child and every relationship has its own path.

If an adoptive parent and the (adopted) child face a challenge in bonding with each other, who can the parents seek help from? Are there enough resources for adoptive parents in India?

In such a scenario, I would encourage parents to talk to other adoptive parents to get some tips and also a reality check around expectations. I remember telling a PAP that it took one of my daughters two years to really start hugging me on a consistent basis. She had bonded with me in other ways; it’s just that hugging wasn’t her thing in the initial years. I think the PAP was quite surprised but I also hope it gave them some perspective on how every child is different.

For more formal counselling, the adoptive parents can reach out to therapists, though I am not sure how many therapists in India today are well versed with adoption. So try both formal and informal help.

Disruptive adoptions are also on the rise. What happens when an adoptive parent and a child decide that they do not or no longer function as a family?

I want to step back and bring a bit of a perspective to this since it’s an important topic. My understanding is that until few years ago, people only adopted babies or very young children. Now people are becoming open to adopting kids of all ages, a positive development which needs to be supported with more preparation and more counselling. I wonder whether disruptive adoptions happen due to lack of such counselling.

One of the adoptive families in India recently adopted a 12-year old child. I had long conversations with them perhaps four to six times before the adoption, and about four to five times post adoption. The family is obviously very open-minded and warm. Still I could see how talking through the process was useful for them. I believe this type of a support network should be in place for all adoptions.

There is a process for adoption dissolution when the adoption does not work out. But let’s try and make sure we never get there. Let’s prepare the families upfront.

If an older adoptive child displays behavioural issues that may include violent behaviour, what can an adoptive parent do to help the child and also themselves?

First and foremost, let’s remember we are talking about a child, irrespective of whether the child came into the family via reproduction or adoption. Seek out relevant resources and support. Find good therapists and child counsellors. It’s not easy but it’s doable. Make sure the child knows that his/her acceptance in the family is not dependent on his/her behaviour.

You also run a campaign regarding safe surrender. Can you tell us something about it?

Indian law allows parents or guardians to legally surrender a child at an adoption agency, if they are unable or unwilling to raise a child. This is a hugely important law to protect children but public awareness about it is non-existent. Almost weekly we see news stories about children being unsafely abandoned or killed. Which is why we are running the safe surrender campaign, which you can read more about here:

https://waic.in/safesurrender/. We also have an ongoing petition to the Indian media about it: http://change.org/SafeSurrender and we are currently training Anganwadi workers in one of Telangana’s district about this law.

I believe building Safe Surrender awareness requires much more attention and resources. So I am hoping that at some point the government would highlight Safe Surrender just like they are running campaigns such as Beti Bachao Beti Padhao.

You can see the backs of women in pretty blouses and saris, and a woman in green sari in the front. She is explaining things, there is a laptop and on the wall, at TV, on which the contents of the slides from the laptop are shared — A workshop on Safe Surrender being conducted in Telangana

Can you share a couple of stories or case studies from the Facebook group that you run, in which the adoptive parent was helped with advice, resources or support that helped them go ahead with a successful adoption or helped provide a solution to an issue or a problem.

There are many small stories, one of which I mentioned above – the family who adopted the 12-year old child reached out to me through this Facebook group. Another anecdote I can share is about another family in India who adopted siblings and used the group to talk about getting prepared for the adoption, and some everyday things post-adoption such as helping the kids learn English etc.

What made you choose to work in the adoption ecosystem?

Before I became an adoptive parent myself, I theoretically knew that each child deserves a family who passionately loves and protects them, how important it is for children to feel secure in a safe family, and how vulnerable children are in many shelters and other less than ideal scenarios. After my daughters’ adoptions, the reality of it hit home. They had been impacted terribly by previous lack of care, but as soon as they came home, they started thriving very quickly and beautifully. It was magical to see their personalities transform and them becoming their own person. The idea that any child anywhere is in a vulnerable position is not acceptable. So I work in this ecosystem to hopefully make a tiny contribution towards ensuring a safe family for every child.

Recently, an adoptive mother shared her experience on a professional network. She said that the company she worked for, refused to give her maternity leave since the child she had adopted was not an infant. Do you think there can be a greater sense of awareness and possible solution seeking exercises on an issue like the one above?

I had faced the same issue a few years ago. I had even started a petition about it. I think this is one of those issues which is so solvable that it’s ridiculous that it exists in the first place. All the government has to do is say we don’t differentiate between maternity leave for reproduction and adoption. Both get the same leave. Done. There are less than 4000 adoptions versus millions of births annually in India. So parity in maternity leave is a very minor thing from a human resource perspective, but an extremely important thing for the mental welfare of every child who has just been adopted into a family and needs time to bond and adjust.

Interested in reading more stories about adoption? You can read Sangitha Krishnamurthi piece on how certain issues in adoption are often pushed under the carpet here. You may also like to read a piece by Anjali Fahnline,14, who talks about her journey as an adoptee here.