How do health policymakers at the local, national, and global levels make decisions? What informs the directives that impact the lives of so many? “Evidence,” of course. But what exactly counts as evidence in the health industries? What kinds of knowledge does this evidence produce—and what kinds of knowledge does it preclude? Who is included in the creation of this evidence—and who is not?
These questions are at the heart of Dr. Marisa de Andrade’s “Measuring Humanity” project at University of Edinburgh. Launched in 2013, Measuring Humanity explores an alternative approach to the study of systemic health problems: the arts. When it comes to medicine and other clinical professions, arts-based approaches have historically been dismissed. This is a shame, according to de Andrade, as the arts offer distinct methods and insights that ought to inform health policies at every level.
For instance, the arts often better facilitate collaboration between researchers and participants. In a phone conversation about her work, de Andrade emphasized that Measuring Humanity researchers co-produce knowledge about health behaviors with the participants of their projects, rather than studying those participants from a critical distance. And this co-production occurs in the spaces that participants already inhabit, rather than in a laboratory or consulting room. She and her colleagues meet people “where they are”—in coffee shops, on the streets, and in other public venues. Furthermore, they speak participants’ language, even if that means learning an entirely new idiom.
Sometimes that language is hip-hop. A few years ago, de Andrade was asked by the National Health Services to engage with marginalized communities in Glasgow—specifically, Pakistani, Polish, Slovakian, and Romanian populations—to understand these individuals’ attitudes about medical authorities and their motivations for making certain health choices. De Andrade spent time with these individuals and quickly realized that music served an important cultural function for them. The project “Dear Human” was born.
Together, de Andrade, her team, and research participants created a hip-hop video that challenges policymakers to rethink attitudes about what qualifies as evidence, while also presenting data gathered from Glasgow community members about the factors for their distance from health authorities. The video’s lyrics suggest that there are various reasons for this distance, including lack of resources, mistrust of authorities, and other structural barriers. But it’s the video’s form that suggests a potential response to the community’s absence from public conversations about health—musical performance.
“Dear Human” raises the same issues that artists such as the late Tupac Shakur, known for songs like “Dear Mama,” have been rapping about for ages—the need for systemic change.
“Dear Human” raises the same issues that artists such as the late Tupac Shakur, known for songs like “Dear Mama,” have been rapping about for ages—the need for systemic change. This theme is reflected in the lyrics of “Dear Human,” written by Belle Jones: “Sadly, it’s a fact we’re not all equal. Individuals in our billions exercising free will. And what’s freedom for you might not be freedom for her.”
Other Measuring Humanity projects have taken the form of comedy or theater, though some take a form that is completely outside of de Andrade’s repertoire. She was recently involved in a project involving the Deaf community for which mental health resources are lacking, which made her appreciate the importance of learning British Sign Language. Basic communication was a major barrier, and interpreters were difficult to access at short notice. This made her empathize with those who couldn’t get help when they most needed it.
If Measuring Humanity goes global, who knows what language she may learn to speak. “Cooking?” she wonders, adding that “any ritual” can provide a mode of engagement. Her research has taught her that communities may not be as hard to reach as many researchers think; one just needs to be willing to meet community members on their own terms.
To be clear, de Andrade does not propose that arts-based methods are the be-all and end-all when it comes to collecting and presenting health data. “We’re not asking people to renounce the sciences,” she clarifies. “It’s not an either/or.” Art and holistic ways of understanding the world can co-exist with more reductive methods. In fact, the two enrich each other.
“By privileging the person’s voice, a richer understanding emerges of complex, deep-rooted reasons for ill health,” de Andrade says on the project’s website. “Connecting the individual to the system reveals how diverse subjective realities (personal and even subconscious motivations) collide with an objective reality (structural drivers of inequality).”
This idea—that a deeper, richer reality is made visible when singular truths and universal laws “collide”—invokes a longstanding but historically controversial tradition: Romantic Science. This tradition combines two methods, one experimental and generalizing, the other descriptive and particularizing, to better account for the multiple realities in which humans exist. Romantic Science predates but was made famous by figures like Soviet neuropsychologist A.R. Luria and his protégé, Oliver Sacks, who invoked the narrative arts in their clinical writing.
Both Luria and Sacks faced intense criticism from the medical establishment for drawing on “unscientific” methods. The famous Ivan Pavlov, for instance, upbraided Luria for adopting a holistic approach and failing to approach human behavior from “low-level units.” According to Luria’s biographer, Luria had shared a paper with Pavlov, “The Nature of Human Conflicts,” which summarized two of his earlier monographs on Sigmund Freud. The day after receiving the paper, Pavlov stormed into Luria’s office and tore the manuscript in half. Pavlov’s criticisms led to an official Soviet condemnation of Luria’s work, and Luria was prohibited from teaching, researching, and publishing any ideas with this bent. Sacks was not a political pariah, but he, too, endured scrutiny from peers for writing “fairy tales” about patients.
Perhaps the climate has become more favorable for arts-based approaches. I asked de Andrade about the larger “humanities turn” in clinical fields, evidenced by burgeoning disciplines such as Narrative Medicine and Medical Humanities. Specifically, I wanted to know if she thinks arts and other “soft” sciences are, in fact, on the rise. “I think we are riding the cusp of a paradigm shift,” she answered. From her perspective, scientists, clinicians, and policymakers are beginning to acknowledge the limitations of traditional methods, especially when it comes to understanding the systemic issues affecting health communities.
But she admits that movements like Measuring Humanity run the risk of resembling the very forms that they are meant to challenge. As she puts it, “art can be instrumental too.” For instance, art can provide a means for individuals in power to project their own realities onto others or to exploit others’ stories. Art also makes it possible for individuals to misrepresent others. De Andrade wonders about these possibilities: “In my attempt to understand these individuals, am I hurting them?”
She also intuits that work like hers may run the risk of tokenism. Measuring Humanity exists to bring marginalized voices into public health conversations. Through these very efforts to be inclusive, it can be tempting to think, “Oh, I can tick that box” and move on. De Andrade wants her and her team members’ engagement with communities to be sustained. “Like any relationship, it needs to be cultivated.”
Of course, maintenance is difficult, especially if funding for a particular initiative expires. Often, it is the “good will of individuals” that keeps causes alive. Lately, there seems to be a lot of good will going around: “it’s starting to feel like a movement,” de Andrade says.
The enthusiasm for alternative approaches to the study of health may be due to the increasing number of individuals across the globe who feel disenfranchised from the health systems upon which their lives depend. The movement’s success may also be due to new technologies, such as social media, which better allow individuals to participate in society and to engage about the policies that impact their lives. Whatever its causes, this advocacy spirit encourages de Andrade, and she is excited to see how and where these human connections grow.
Follow Measuring Humanity on Twitter @MeasureHumanity or visit the website, https://measuringhumanity.org.