A reminiscence of time spent with her grandmother anchors Sara’s examination of our concept of health literacy and how we can meet patients where they are.

The term 'illiterate' is often used colloquially in a stigmatising manner in order to label someone dim-witted and incapable. Its use in the following paragraphs is intended to carry no such stigma, simply signifying an individual with non-existent or severely limited reading (and in some cases, arithmetic) ability.

While going through the death registry books in the cartorio civil in Bom Jesus, I came across the following handwritten entry. There were many others just like it. It encapsulated something about the violence of hunger, exclusion, and marginality in this community:

Died: September 18, 1985, Luisa Alvez de Conceicao, female, brown, aged thirty-three, unmarried

Cause of Death: Dehydration, acute malnutrition

Observations: The deceased left behind no living children and no possessions. She was illiterate. She did not vote

—Nancy Scheper-Hughes, Death Without Weeping, 1992

Although Nancy Scheper-Hughes never engages explicitly with illiteracy in any depth, fifty-one further references to it are made throughout her seminal work Death Without Weeping, a labour of love born of decades researching poverty and sickness in the Brazilian northwest. 

The few sentences above condense an entire life into a few words, a written record of an illiterate existence. This record is at once a mundane document, and a terrifying, indecipherable symbol of powerlessness for the unlettered whose lives and deaths are interminably interpreted, represented, and controlled by words in this way.

The relationship between literacy and health is a complex one. Studies have linked low literacy with hypertension, poor glycaemic control and, in HIV-positive patients, higher viral loads. A recent review of literacy and health outcomes concluded “low literacy is common and when unrecognised, presents a barrier to effective care.” This barrier is multifactorial, existing within an ecosystem of deprivation, where illiteracy is an outcome that both reinforces and is reinforced by other factors such as poverty, discrimination, and gender-based violence. 

Literacy level affects many areas of care, including doctor-patient relationships, self-management, and so called 'compliance'—the measure of how much patients conform to recommendations of health professionals. Our world's very poorest people make up almost all of its illiterate population and health outcomes in these economically marginalised communities are some of the bleakest.

I know this to be true, not just as a public health researcher but as the granddaughter of an illiterate grandmother. My teta was one of the smartest people I’ve ever known, but she never had the chance to go to school, and never learned to read or write. She was also incredibly brave, but lived in fear someone would notice she couldn’t read. As many people living with low or no literacy do, she developed complex strategies to avoid detection and its accompanying humiliation. Once, while getting ready for a doctor's appointment about a back problem that had been plaguing her for years, she asked me to order a stack of printed x-rays chronologically, then memorised the number of x-rays (fourteen) and their dates in case the doctor asked for a specific one. Despite my pleading, she never let me come to any of her appointments, fearful I would give her away by reading something for her.

In the last years of my grandmother’s life, she developed atrial fibrillation; a dangerous condition where the top chambers of the heart quiver or twitch instead of beating. She was prescribed medications for this but I noticed her taking them irregularly or not at all. When confronted, she said that she didn’t understand why she needed them. She had asked for an explanation from her doctors, but they had ignorantly assumed that an illiterate old woman would be incapable of understanding how her own beating heart works. So we sat down together on our balcony, where I once shelled peas in her lap, and I described how her heart has valves and chambers and arteries. I told her that it is full of electricity, and that there are millions of little gates which allow this electricity through. I explained that sometimes, as you get old, these gates will stop working properly. Seeing her face light up with pride at this new knowledge was the very definition of joy.

As a granddaughter, I have personal insight into my grandmother's struggle with the literate world around her. As a researcher however, I am necessarily an outsider. Research, as an academic and institutionalised practice, requires academics to be literate in order for our work to be recognised. Studying illiteracy within academic structures that depend so heavily on the written word thus becomes a practice of contradictions. Educational anthropology—the study of cultural processes in education structures globally—has, however, provided useful frameworks for researchers to engage with issues of literacy and lack thereof. Broadly speaking, two opposing perspectives emerge from this field of thought: the so-called 'autonomous' model and the 'ideological' one.

The autonomous model views (il)literacy as separate from the social conditions which produce it, such as poverty and discrimination. It therefore treats literacy programmes as a neutral and needed “technologies” that can be applied like medicine to cure the social ‘problem’ of illiteracy. This idea isolates literacy as a variable independent from its social and cultural roots, and equates its achievement with notions of 'progress' and 'civilization'—something that can and should be achieved by educating individuals and communities in these same ideals.  On the opposing hand, the ideological model proposes a concept of literacy that is embedded in a complex socioeconomic web of powerful social and historical forces including gender, colonialism, race, and class. Therefore, illiteracy is not something to ‘treat’ through education, but rather a tool through which we can learn more about our world.

Paulo Freire is a renowned Brazilian educator whose life’s work concentrated on consientizao: a system of teaching literacy in ways that engage with learners’ lifeworlds and encourage critical thinking. Much of Freire’s philosophy fits well under the umbrella of the ideological model, framing literacy acquisition as means of actively raising individual and social consciousness. Freire and his followers reject the 'banking' model of education, whereby students are viewed as empty vessels into which educators must deposit knowledge, limiting learners' roles to those of “receiving, filing and storing the deposits.” Instead, he advocates approaching literacy by questioning the social reality in which it exists and is allowed to reproduce. In this way, literacy becomes a catalyst for thorough exploration of the ways in which health, economic security, and educational achievement are connected by networks of deprivation that are often antagonistic to their collective wellbeing.

This socially conscious perspective allows us to understand how a person’s literacy directly affects their health literacy: their ability to “gain access to, understand and use information in ways which promote and maintain good health”. Individuals who are lacking literacy are fundamentally disempowered when interacting with literate health systems since this routinely prevents them from fully appraising or engaging with their treatment options. They are sometimes given multiple drugs with complex dosing schedules, differing interaction precautions, and possible generic substitutions. Healthcare staff tend to assume they are easily understood, leading many to experience anxiety and shame when they are confronted with written information they cannot decipher. Women represent a full two-thirds of illiterate people globally, and these women are less likely to seek preventative care such as mammography screenings, pap smears and vaccinations—all of which endanger their health and complicate their relationship with the medical establishment. The example of Beth, from research into experiences of women with illiteracy accessing healthcare, is worth reproducing here in full:

She came in complaining of being dizzy. Her head hurt and she felt tired. It had been like that for days. Maybe weeks. She couldn't remember. Even though she had not seen this doctor before—they came and went at this teaching hospital where poor people could afford to go—she knew the drill. She brought out a clear plastic bag with eight treasured bottles. Eight bottles that the young resident started pulling out one by one.

“How many of these do you take?”

She looked at the bottles. “One a day.”

“And these?”

A pause. “One a day.”

The doctor kept holding out bottles and asking. Then she put three bottles together and looked at the patient. “Do you see these three? They are all the same medicine. They are all for your blood pressure.”

“Oh,” she said.

“This little bottle has 40-milligram pills, these other two have 10 milligrams, but they are the same medicine. And see these two other bottles? They are both for your cholesterol. You were taking too many medicines. I think that was probably causing your dizziness.”

The doctor poured pills from bottle to bottle, discarding the empty, redundant ones. She went over the medicines with her. It was a little confusing because one pill she was supposed to cut in fours, but only when she finished taking all the pills from some other bottle.

“You got it?” The doctor asked.

She nodded. But her mistake had damaged her health and her pride.

—Kennen, Martin, Davis, Stories of Women, Words, and Well-Being: The Effect of Literacy on Women's Health, 2004

While communication issues such as these remain on the periphery of medical consciousness, the establishment has not ignored them entirely. Recently there has been a stir of interest in health literacy. Several tools have been developed to measure the literacy of patients using health services. Among them, Newest Vital Sign (NVS) was developed in 2005 by Pfizer as a tool to help healthcare staff assess health literacy skills. Consisting of a simplified ice-cream nutrition label with a set of accompanying questions, it is designed to be ‘administered’ in only three minutes. Perhaps unsurprisingly, since it is aimed at health professionals, it is described using very medicalised language that demonstrates little engagement with the broader field of literacy. Instead, the tool relies on functional literacy tests that measure patients’ ability to tackle specific and socially-valued tasks.

As a result, this approach problematically places the onus of illiteracy on an individual patient’s capacity to productively contribute to a capitalist social system that excludes and discriminates against them. When viewed from an ideological model of illiteracy, we understand the poor health outcomes experienced by patients with low literacy to be a product of socially-produced inequities rather than of individual failings. Therefore, if an illiterate HIV-positive person is three times less likely to understand the meaning of their viral load, it is arguably more harmful to intervene by measuring and judging their individual understanding, without acknowledging the health and social system that excludes alternative systems of communication and perpetuates the inequities that lead to these imbalances in the first instance. In order to be both empowering and effective, engagement with this issue must first grant greater individual autonomy and respect of personal epistemologies of body and healing. 

Key to moving towards this more nuanced and holistic engagement with health literacy is ensuring healthcare students are provided with the tools to engage in this way. Medical school curriculums of course cover communication skills but these sessions are usually geared towards specific tasks, like breaking bad news or explaining intimate examinations. Engaging with the complexities of illiteracy goes beyond the oft-repeated advice to use ‘plain language’ and ask patients to repeat things back, since many of the issues faced by these patients arise before or after their consultations. The issues highlighted by Pfizer’s NVS tool—treating literacy as a symptom to be cured and isolating it from the social reality of patients—are also important issues in medicine as a whole. People like my grandmother, or the Brazilian protagonists of Death Without Weeping, will never feel supported by a health system that ultimately doesn’t understand them. A thorough tackling of literacy as a determinant of health demands that we view it through a lens of consientizao, immersing our understanding of ill health and low literacy fully into the vast networks of deprivation which produce them.