FROM THE MARGINS OF SOCIETY… TO THE MARGINS OF A REMARKABLE NEW BOOK
Gilead Sciences, in conjunction with Professor David Olusoga OBE, launches ‘From the Margins’: intended to be one of the most difficult books to read
A book unlike any seen before has gone on general release today, and it is being billed as the most difficult book to read that has ever been published.
From the Margins has every word printed entirely in the margins of the pages - a direct inversion of a ‘normal’ book. Those words in the margins tell the profoundly moving personal stories of marginalised people living with HIV, Hepatitis C and Cancer.
The book has been released to raise awareness of the issue of marginalisation and health inequality in the UK. In Britain in 2023, the year of the 75th anniversary of the NHS, we still see inequalities in our healthcare system and society, and those in the margins do not all get the same level of care.
The foreword to From the Margins has been written by globally renowned historian, writer, broadcaster and film-maker Professor David Olusoga OBE, whose commentary on racism and inequality has been widely recognised and commended. Providing historical context to the issue of marginalisation and health inequality and showing it to be something that has existed for centuries, Olusoga’s powerful foreword draws parallels between the present day and the past. It starkly illustrates how lessons have not been learned.
Professor David Olusoga OBE said; “Human societies have always been unequal and human beings have always displayed a tendency to recoil and retreat from illness and disease. The wealthy and the well-connected have always been afforded access to care and treatment that the poor and marginalised have been denied.
Individuals are pushed to the margins because of their social class, race, ethnicity, sexuality, or poverty, and when these people are faced with disease, what results is exacerbating health inequalities. As many of the personal testimonies in ‘From the Margins’ powerfully demonstrate, historic patterns of inequality and marginalisation have not been consigned to history. They are affecting lives and shaping outcomes in our society right now in the 21st Century.”
With its unintuitive and challenging layout of the words, From The Margins is a difficult book to read because the stories in the margins tell, at times, heart-breaking tales of marginalisation. They are unfiltered, unedited and are entirely the words of those who lived these experiences. The people featured in the book are:
- Joshua Royal– a remarkable young, gay, Black man from London who contracted HIV and battled racism and discrimination to prevail and help others
- Husseina Hamza– a Muslim woman living with HIV. She fought stigmatisation, ignorance, and isolation, and came out the other side
- Kieron Allen– a man who fought addiction for 30 years before contracting Hepatitis C in his 50s. Kieron battled against the odds and refuses to be defined by his disease
- Leanne Pero MBE– an indomitable, unrelenting young Black woman who contracted breast cancer. Leanne fought racism and ignorance, and now helps others living with cancer
- Rebecca Tallon De Havilland– a transwoman living with HIV. Rebecca fought immense HIV-related stigma throughout her life. She has, and continues, to pave the way for others to live their lives as their true selves
- Stewart O’Callaghan– a beautiful person living with blood cancer, Stewart was passed from pillar to post, was marginalised and misunderstood, but ultimately prevailed
Despite the devastating accounts of hardship, stigmatisation and pain, each story in From The Margins carries a message of bravery and hope. The people featured have triumphed to overcome marginalisation and help others, but there are many out there who have not.
While it is hoped that the release of the book will shine an uncomfortable light on the issue of marginalisation and health inequality for the British public, it will also be used by Gilead Sciences as a catalyst to try and affect changes for those diverse communities and individuals who remain unheard. The ‘afterword’, written by Dr Véronique Walsh, General Manager for Gilead Sciences in the United Kingdom and Ireland, offers her perspective on the next steps that need to be taken to address these issues. Commenting on the book, Véronique, said:
“These heart-breaking, yet inspiring stories illustrate why it is more important than ever to hear and act upon what patients tell us. Our contributors have given a voice to the unheard and marginalised.
At Gilead Sciences we are committed to supporting all patients no matter their background. Our approach to partnership involving communities develops trust and helps tackle health inequalities. It is vital we all work together so no one is left behind or kept on the margins of society and healthcare.”