Book review: Lives on the Edge

By guest contributor Amar Saeed

As a medical student, I took up a project where I surveyed people diagnosed and living with tuberculosis. The intention was to find linkages between socioeconomic status and tuberculosis infection, as in the medical set-up, the focus was always towards the pathology and microbiology of the organism and the affected body, and not as much on the environment these bodies were existing in, which I felt was necessary to investigate and implement more consciously and intentionally into the National Tuberculosis Elimination Program (NTEP) policies. That is when I came across Radheshyam Jadhav’s ‘Lives on the Edge,’ which promised to engage with the narratives of people from marginalized communities affected by Tuberculosis, I was intrigued and bought myself a copy. Jadhav’s approach resonated with what I was trying to do. My understanding and learning at that time made it difficult to understand the ‘patient’ outside of their diagnosis, and thus Jadhav’s mission stood out to me for his honest attempt to engage with not just the patient’s diagnosis and treatment but their life as a whole.

In his book, Jadhav wants to show the ground reality of Tuberculosis by presenting data and stories of people from marginalized communities affected by Tuberculosis. These stories show Tuberculosis’s social impact on the individual outside the realm of healthcare facilities and treatment regimens. He sheds light on factors such as discrimination and stigmatization, which are commonly ignored due to the excessive focus of policymakers and healthcare providers on medical treatment.

In her book ‘The Hologram,’ Cassie Thornton talks about ‘Greek Solidarity Clinics’ whose aim was to go a few steps ahead of simply providing conventional healthcare for free in trying to ‘overcome elements that are broken in dominant approaches to healthcare.’ Thornton paraphrases the issue that the Solidarity Clinics were trying to challenge as-

“Current medicine separates the person from their environment, the doctor from the patient, the body from the psyche, the body into many parts … without ever putting them together again.”

In these Greek clinics, the patient would be understood as an ‘incomer’ instead of a ‘patient.’ These incomers would then be ‘encouraged and empowered to become a member of the clinic’s governing assembly, to participate actively in matters of their health and to connect it with the health of their community.’ Through this process, the incomer’s active participation in their health and community became a central form of their health treatment.

On a similar tangent, in ‘Lives on the Edge,’ Jadhav also puts forth the stories of tuberculosis survivors and people living with Tuberculosis to show these people as not just patients in a hospital but as humans with lives outside the hospital and its imposed meaning of patienthood. As someone who has routinely worked in healthcare facilities, I can attest to how the medical system sees the people affected by Tuberculosis as just “containers” of an illness and not as complete human beings with a life outside of their illness.

In Thornton’s book, she writes about how in the Greek clinics, the healing began by ‘undoing the subordination and alienation they have experienced not only in a capitalist society but also in the conventional medical system where they are typically seen either as a body, or a worker, or a person, but never as all three at once.’ Jadhav also endeavors to restore the humanity of the ‘patients’ he engages with by focusing on their life as a complex and dynamic one and not one that is simply defined by their illness. Especially in the case of people from marginalized communities, it is important to understand how marginalization interacts with illnesses and Jadhav takes up this task with great clarity of thought and purpose. Jadhav’s engagement with marginalized people also stands out for his honest willingness to portray the self-empowerment of people who would otherwise be understood as a burden in society. In a society where the severity of diseases is understood in terms of how it would disrupt caretakers’ (families and friends’ lives), Jadhav’s interviewees struggle to reclaim the power to care for themselves. One such story belongs to Sunanda whose experience of being deceived into marrying a man with HIV at a very young age, losing a child and later, being widowed after being diagnosed with HIV and tuberculosis herself, led her to drag her in-laws to court for her share of the property which she wanted to use to provide herself better healthcare treatments from private hospitals. The long court-battle also sprung from her experiences of being ostracized, neglected, and mistreated in government hospitals. Remarkably, through all this turmoil, she somehow managed to complete her education and later became a coordinator at an ART (Antiretroviral Therapy) department of a government hospital. Sunanda won her legal battles and got her share of the property that she sold to get the money she needed for her treatment and education. While working as a coordinator, she even developed a matrimonial app for HIV-infected people to challenge the pattern of men deceiving women into marriage, passing on the infection, and then abandoning them.

Narrating these stories positively is essential for us to challenge the idea that illnesses signal the end of a person’s life. These stories are also signposts that help us reimagine illness and how care is offered (or not offered) as a response in our society- by spouses, families, governments, and society at large. Jadhav also contextualizes these stories with data from official national and international surveys, as well as from research papers.

However, the book does fall short in actually walking us to the future- Jadhav offers no suggestions to the readers about the action that needs to be taken to improve the conditions of people from marginalized communities affected by tuberculosis. It is, of course, a step in the right direction to put forward these stories. However, this book still misses making a sound analysis of what exactly is missing in the Indian medical system that is leading to such negligence towards the healthcare of marginalized communities. There is very little to help us understand how marginalization is understood by the healthcare apparatus and how such an understanding affects the lives of ‘patients’ both within and outside the hospital. Neither does Jadhav tackle ‘marginalization’ as an effect but instead positions it as an identity. That is, we can understand one’s caste as an identity that leads to marginalization in society- but Jadhav speaks of marginalization and not its roots in caste, gender, class, and other such identities and factors.

In her book, Thomson offers us a way forward-

“When healthcare is taken out of the exclusive clutches of jealous “experts,” medicine can become cooperatively creative and can actually produce multiple forms of mutually reinforcing “health”: physical, emotional, social, communal and relational.”

It is in the context of this understanding, that cumulatively, I found Jadhav’s book to be filling a critical gap in our understanding of both tuberculosis and how illnesses are narrativized in India. It encourages us to work towards a holistic involvement of people living with tuberculosis in their own treatment protocols with an emphasis on their well-being not being reduced to pathological changes alone. Jadhav’s book shows us the way and it is for us to map and undertake the rest of the journey with a focus on India’s most marginalized.

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