Dr. Manorama Pinakapani, the director of the Community Health Education Society (CHES), dedicated nearly three decades to ensuring that every child, regardless of circumstance, is embraced with dignity, equality, and justice.

As the driving force behind CHES, Dr. Pinakapani’s journey began with a profound act of compassion. Two children, afflicted with hepatitis B and HIV, found themselves thrust into a world of fear and stigma within the confines of a hospital ward. Dr. Pinakapani’s determination, sparking a chain of events that would forever alter the landscape of child welfare.

CHES being fueled by a singular mission to provide solace and sanctuary to those society had cast aside. What started as a modest endeavour to care for two orphaned souls has blossomed into a beacon of hope for over 325 children, each with a unique story of resilience and triumph.

Through the lens of Dr. Manorama’s experiences, we dive deep into the challenges, triumphs, and unwavering commitment that have defined her journey. From battling the scourge of HIV stigma to navigating the treacherous waters of disease outbreaks and societal discrimination. Dr. Pinakapani’s dedication serves as a testament to the transformative power of compassion and empathy. Through the eyes of Dr. Manorama Pinakapani, we gain insight into a world where every child is not just seen, but truly understood—a world where compassion knows no bounds, and the promise of a brighter tomorrow .

1. What inspired you to establish Community Health Education Society (CHES), and what challenges did you face in its early days?
   Almost 30 years ago, I began my journey as a pediatric gastroenterologist at a government Children’s Hospital. Two children were admitted under my care, both suffering from hepatitis B infection and HIV. Due to the fear surrounding their conditions, they were pushed into the gastroenterology department. This was a new disease for us, and the social stigma surrounding it was palpable from the beginning. The children were given the last beds in the ward, and even starting an intravenous fluid line was met with hesitation from the nurses. Fear and myths surrounded the diseases, making everyone reluctant to approach them. At that time, there was no cure or effective management for these conditions, exacerbating the fear. The situation was compounded by the reaction of other parents and relatives who visited the hospital. They would come in large groups, creating a sense of unease among the caregivers. Slowly, one by one, they started to distance themselves from the children. Despite the challenges, both children responded positively to treatment, and we prepared for their discharge. However, being orphans from an orphanage, there was hesitancy from the institution to take them back due to their positive test results. They feared it would spread to other children. Eventually, I decided to take personal responsibility for the children’s care, despite resistance from both my family and the orphanage. Some friends offered their support, while others cautioned against the responsibility, knowing the grim prognosis. It was suggested to register an NGO to formalise the care we were providing, and that’s how the idea for the Community Health Education Society (CHES) came about. We registered it and began caring for the children under its umbrella.
   
2. What challenges did you face in its early days?
   From the beginning until today, we’ve encountered various struggles in meeting the needs of the children we’ve taken in. We’ve welcomed over 325 children into our care, with around 40 currently under our roof. Each child presents unique needs, and addressing them requires a multifaceted approach. Discrimination, especially against girls, has been a pervasive issue. Even today, the majority of our children are girls, often abandoned by families after their mothers fall ill or pass away. The sad truth is that some families only show interest in these children when they pass away, seeking death certificates for inheritance purposes. Securing funding has been a constant challenge, as has integrating the children into mainstream education. Initially, we considered staging protests to attract government attention, but instead, we focused on sensitizing schools to accept these children without discrimination. Today, I’m proud to say that many of our children attend schools and colleges, pursuing professional courses and careers. We have engineers, aeronautical engineers, chartered accountants, nurses, and more among our alumni. Even those who didn’t pursue higher education have been equipped with vocational skills, finding placements in various companies. The journey hasn’t been easy, but seeing these children thrive despite the odds reaffirms our commitment to their well-being. From being confined at home to thriving in schools and beyond, their progress fills me with immense pride and hope for the future.
   
3. How has society’s perception of HIV evolved over time, particularly in terms of social inclusion and acceptance?
   Society has undergone significant changes over time. I remember when our NGO children were younger, they were often shunned by neighbours when they played downstairs. But nowadays, children are welcomed at events like weddings and birthday parties without discrimination. However, self-discrimination remains a prevalent issue, particularly among people living with HIV. Many individuals living with HIV experience heightened anxiety about their status being revealed. Simply taking their medication in public can trigger fear of being stigmatized. Despite societal progress, the memory of past discrimination lingers, causing apprehension about potential discrimination. Removing self-discrimination from society is crucial. It’s why I advocate for HIV medication adherence—to empower individuals to live without the constant fear of judgment or rejection. Although society has evolved, the fear of discrimination still weighs heavily on the minds of those who have experienced it firsthand.
   
4. What are the primary health issues that the children under your care commonly face?
   Recurrent infections are common among the children under my care, ranging from respiratory infections to gastroenteritis and skin lesions. When gastroenteritis strikes, it often affects multiple children simultaneously, sometimes necessitating intravenous fluids and other medical interventions. Pneumonia cases also require swift hospitalization. However, the most concerning are communicable diseases like measles and chickenpox. We once had a consecutive outbreak of chickenpox affecting 12 children in a row. Due to their compromised immune systems, any epidemic poses a significant risk to these children. During the COVID-19 pandemic, 18 of my children tested positive, prompting us to close our school temporarily and convert it into a makeshift hostel for the infected children. With our cook also infected with COVID-19, we relied on the generosity of volunteers who provided food three times a day for the children. Every day presents new challenges, but we remain committed to managing and overcoming them for the well-being of the children under our care.
   
5. What are some of the most joyous moments you’ve experienced throughout your journey?
   There have been many moments of joy throughout our journey. One of the happiest moments was when the first child we tested for HIV came back with a negative result and went on to be adopted. Another joyous occasion was when a child from our home was adopted internationally despite having HIV. The first graduate from our home filled us with immense pride, as did the first postgraduate and engineer. These milestones marked significant achievements for our children. Additionally, when a generous donor from London provided funds specifically for music education, we invested in musical instruments and hired a teacher. One of our children even participated in a Guinness World Record event with Shivamani, earning a certificate. Witnessing our children experience normalcy, like attending a wedding for the first time, brought immense happiness. Their accomplishments in activities like fencing and art, including winning medals and awards at the state and national levels, have been sources of great pride. Seeing a sick child recover and thrive fills us with hope and happiness.
   
6. What should people understand about the needs of these children who are HIV positive?
   It’s crucial for people to understand that HIV isn’t as easily communicable as diseases like smallpox, chickenpox, or measles. HIV only spreads through specific routes, such as unprotected sex, sharing needles, and from mother to child during childbirth or breastfeeding. We’ve observed this in our own home, where negative children grew up alongside positive children without contracting the virus. For example, one child, whose mother was HIV-positive, lived in our home until the age of 21 without becoming infected, despite close contact with other children. We never use protective gear like aprons, gloves, or overshoes when caring for the children, and even accidental pricks with needles haven’t resulted in transmission. With advancements in HIV treatment, such as antiretroviral therapy (ART) and various drug regimens, managing the virus has become much more feasible. The government has also taken significant steps to support HIV-positive individuals, resulting in a reduction in vertical transmission rates. However, it’s essential to educate children leaving our care about their responsibilities regarding HIV. They need to understand the importance of disclosing their status to potential partners and making informed decisions about marriage to prevent the spread of the virus. With proper education and support, we can continue to prevent a second epidemic and ensure that HIV-positive individuals live fulfilling lives without fear of discrimination or transmission.
   
7. What are some key aspects that individuals and communities need to understand regarding child protection and rights, based on your experience and insights?
   It’s vital for people to understand that caring for a child isn’t just about having a nurturing touch; it involves responsibility and awareness of potential risks. The world must understand children. Parents especially need to recognize that they are guides rather than owners of their children. They should nurture their children’s individual interests and aspirations, rather than imposing their own desires onto them, such as forcing a career path onto them. Parents must also remain vigilant about potential dangers, such as sexual exploitation, and educate their children about recognising and avoiding such risks. During the COVID-19 pandemic, we conducted research on engaging bored children at home. We discovered that everyday tasks, like changing a bulb or cooking, can be valuable learning experiences for children. Parents should take the initiative to teach their children practical skills directly, rather than relying solely on formal education. Community involvement is also essential in safeguarding children’s rights, including preventing child marriage and labor. Every child deserves protection from harm and exploitation, regardless of their background or circumstances. By promoting awareness and vigilance, we can create a safer environment for all children to thrive and grow.
   
8. How can active listening and communication with children contribute to understanding their perspectives and fostering deeper connections?
   Listening to children and engaging in conversation with them is crucial because oftentimes, we may make decisions regarding them without truly understanding their perspectives. When a child expresses themselves, it’s essential to grasp the impression they convey and the emotions they feel internally. Paying attention to their facial expressions and understanding their mental state is vital. Through active listening and communication, a deep connection with the child can be established, enabling us to comprehend their thoughts and feelings better. It’s also important not to blame the child for any issues they may be facing, such as instances of abuse. Instead, it’s the community’s responsibility to address such matters and take appropriate action against the perpetrators. Whether it’s taking turns to drop them off at school, tucking them into bed at night, or sharing a meal together, these moments foster a bond and allow children to express themselves freely. Planning family holidays and setting aside dedicated time for family discussions are also essential, regardless of how busy we may be. By prioritising family time, we can address important issues and strengthen our relationships.