Book excerpt: Unheard, The Medical Practice of Silencing by Dr Rageshri Dhairyawan
by Rageshri Dhairyawan
This Quarterly, we are featuring an excerpt of the new book, Unheard, The Medical Practice of Silencing by Rageshri Dhairyawan. In Unheard, Dr Dhairyawan delves into the history of medicine to reveal how ignoring patients’ voices has been a longstanding issue. Western medicine was founded on the idea that doctors should hold all the power, leaving patients without a say in decisions about their own bodies, even when those decisions were made in the name of healing. This, combined with societal prejudices, has led to significant gaps in medical knowledge by silencing people for centuries.
Through this eye-opening and timely work, Dr Dhairyawan advocates for a reimagined healthcare system where truly listening to patients becomes a cornerstone of medical practice.
Read an excerpt of chapter six below.
Click here to order Unheard from outside of the UK.
Click here to order Unheard from inside the UK.
Learn more about Rageshri here.
Chapter 6 Roar: How Patients Fought to Get Heard
Who a disease predominantly affects influences how much patients are listened to and how much they are silenced, as individuals and as groups. This in turn influences how much resource is put into addressing the disease, the research done and how much knowledge we have about it. To understand this better, imagine if HIV had only affected people in the Global South. Would we have had such fast scientific progress? Would we have such effective HIV treatment now?
For sociologist Stephen Epstein, writing in 1998, it mattered that AIDS affected white middle-class gay men in the US and Europe, as they had ‘a degree of political clout and fundraising capacity unusual for an oppressed group’. He explained that this was because within gay communities were many professionals who worked in science, education and the arts, which gave them a great deal of ‘cultural capital’. The members of ACT UP who were invited ‘inside’ to speak to government and pharmaceutical companies were white middle-class gay men. From the diverse activist group, they were most likely to be seen as credible sources of knowledge. As we know from the concept of epistemic injustice, white middle-class men are one of the groups most likely to be heard, seen as being sincere and taken seriously. So, if HIV/AIDS had just affected Black and brown people in the world’s poorest countries, they would not have had this social capital. By the enduring inequity they face in accessing
drugs, we know that their lives continue to be less valued by people with power in the Global North.
If we compare HIV to another global disease, tuberculosis (TB), we can see this more clearly. TB has been around for a very long time, first documented in India and China more than 2,000 years ago. Until the twentieth century, when antibiotics were discovered, TB was often fatal. John Keats, the English poet, died from TB at the age of twenty-five. TB can affect anyone, but as it is airborne (spread through air transmission), it is more likely to affect the poor who live in crowded and often unsanitary conditions. Once treatment was discovered, those that could afford the lengthy course of antibiotics were cured. Now TB remains most likely to be seen in countries in the Global South and among impoverished and socially marginalised communities in the Global North. The area of London where I work has a high burden of TB compared to the rest of the UK. TB still kills, causing 1.6 million deaths a year around the world. It was announced as a global emergency by the World Health Organization in 1993, but progress on reducing it globally has been slow compared to other infections. As it is an airborne infection, fear of transmission has meant that it remains stigmatised and that people with TB have been subject to discriminatory practices and social exclusion such as forced quarantine – violations of their human rights.
In 2023 I was invited by visiting professor Madhukar Pai to attend his lecture at the London School of Hygiene and Tropical Medicine. Pai is passionate about health equity and, in particular, improving TB care. In his talk, he emphasised how far we still had to go with TB, in that we still don’t have adequate diagnostic tests; the only vaccine we have started being used in 1921 and offers little protection; and that access to the newer and shorter antibiotic treatment regimens are restricted. I was struck by his comparisons with HIV, where he felt that the speed of scientific progress was much faster. He theorised that patient voices had been less heard in TB than HIV over the years and perhaps this was the reason.
This was my first time inside the London School of Hygiene and Tropical Medicine, an organisation that has been an integral part of global health, and which has been recently examining its role in colonialism. As I sat in the lecture hall feeling the weight of its history, it became evident to me that as TB mainly affected Black and brown people who make up the world’s poor, this was why their voices were not being heard. This was racism.