Narrative medicine as social justice activism – Interview with Professor Carol-Ann Farkas

Professor Carol-Ann Farkas, Director of the Bachelor of Arts Program in Health Humanities, Massachusetts College of Pharmacy and Health Sciences.

What do you think are the most urgent matters when it comes to social justice in health care? Where is there room to improvement?

The United States is home to some of the leading centers for health care research and practice in the world… even as millions of people in the country suffer from preventable disease, insufficient to non-existent or unaffordable health insurance, lack of access to affordable dental and mental health care, high infant mortality rates, and low rates of health literacy. Many of these inequities in well-being are due to the “social determinants of health” – inequities of income, education, and opportunity, which in turn are caused by all manner of structural biases, especially racism, sexism, and homophobia. It’s really not possible to imagine health care as something inseparable from social justice! My colleagues and I try very hard to help our health humanities students understand that if they really care about improving the well-being of their patients, their efforts need to extend beyond the clinic, to support the social and legislative changes we need to reduce inequity and suffering. Some specific changes that we talk about: ensuring affordable health insurance at a minimum, if not introducing the kind of government sponsored health care coverage that is common pretty much everywhere in the West except the US; expanding the definition of health care to include dental visits and mental health care; improving funding and support for new mothers; providing affordable day care; improving our public education system; and – while we’re dreaming – overhauling our criminal justice and political systems to make them more humane and democratic. 

 There is one specific point of intersections between health care and social justice that I want to draw attention to, as a site requiring urgent political action: access to sexual and reproductive health care. In the US, as you may know, the rights of LGBTQ people are under direct threat – not only is legislation pending in many states that threatens to deprive LGBTQ children and adolescents of the rights to physical and mental health care, there is a movement to criminalise simply *talking* about gender or sexual identity, such as the so-called “don’t say gay” law proposed in Florida. Moreover, the US Supreme Court is poised to undo “Roe v Wade”, the federal statute that has protected access to abortion for the last 50 years; in anticipation of this ruling, many right-wing politicians have been working to erode, even criminalise, abortion in many states, while also undermining existing policies to provide birth control or any kind of health care or economic support for new mothers. 

These efforts from the political right to strip away fundamental human rights to wellbeing – and not just in the US, but around the world – must be stopped. Consequently, when we think of our own work to promote wellbeing amongst our students or patients as health humanists and practitioners, we must always include a commitment to justice – practicing health and health humanities has to go beyond individual instances of clinical care, and certainly far beyond the limits of theoretical study. We must become activists, using every means at our disposal – from clinical work, to our teaching and research, to voting and becoming involved in government, to protest – to insist that health care IS social justice. 

Perhaps the greatest threat to health care and social justice in the US today is the urgent need to ensure sexual and reproductive health care.

Is narrative medicine a tool for social justice? Why? 

Narrative medicine can certainly be a tool for social justice, and I think of my own practice teaching and writing about narrative medicine as a form of social justice activism. 

Understanding the social and political complexities of inequality and prejudice is not easy, given the way in which information nowadays is highly specialised within expert circles, fragmented and prone to manipulation and distortion in lay circles. When it comes to understanding the causes of social injustice, and trying to come to some agreement about solutions, so often, we’re simply not speaking the same language. But one language that everyone understands is storytelling. Hearing (or reading or watching) a  story of injustice can quickly cut through the barriers of emotional and cultural biases, to appeal to our innate capacity for empathy and fellow-feeling. When I teach courses on narrative and medicine, my students might start off with a relatively high degree of knowledge about the mechanics of the human body, but their understanding of how and why people’s social environments affect wellness or illness tends to be simplistic and biased; 18-22 years old, they just don’t yet know much about the experiences of people unlike themselves. Exposure to stories – in the form of film, fiction, or graphic memoir – is transformative. Whether fiction or non-fiction, when we engage imaginatively with the storyteller and the world they represent, we can begin to understand how an individual’s physical, psychological, and social wellbeing is inseparable from their social and political situation. Once we recognise ourselves in another through the exchange of stories, we can’t help but sympathise, and deplore the injustice that causes their suffering. Armed with that awareness, we’re better prepared to take action when and where we can. 

Article 25 of the Universal Declaration of Human rights: 1. Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control;  2. Motherhood and childhood are entitled to special care and assistance. All children, whether born in or out of wedlock, shall enjoy the same social protection.” – What about it?

There’s no good answer to this question! Or rather, there’s a simple one: capitalism and patriarchy thrive through the suffering and exploitation of the majority of people. If we want everyone to enjoy the right to basic wellbeing, not to mention if we want to avoid the worst ravages of climate change, we must radically reimagine our social and political relationships. 

How do you think the pandemic affected pre-existing social issues? Did it also create new ones?

I don’t think that any new social problems arose during the pandemic. Rather than create new social issues, the pressures of coping with the pandemic made it harder to avoid confronting the many forms of social injustice that had been there along. Inequity very obviously made the pandemic much, much worse for some groups more than others – race, class, levels of health literacy, and susceptibility to political manipulation were all determinants in whether the pandemic was merely terrifying and inconvenient, or tragically devastating. In turn, the pandemic exacerbated all manner of existing social problems, such as poverty, unemployment, access to health care, and crises of mental health amongst young people.

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