I am a firm believer that stories make up the human experience. They make us who we are and make the foundation of our worldview. They build and shape our communities. They tell stories of our wins and our losses – who we trust and don’t trust. To quote Alsdair MacIntyre, “I can only answer the question ‘What am I to do?’ if I can answer the prior question ‘Of what story or stories do I find myself a part?”. Narrative ethics values stories in the same way. In medical ethics, narrative ethics is an alternative to principlism that focuses on the importance of stories to morality and decision making. Storytelling is especially significant in African-American communities. Initially in African communities, storytelling via oral tradition was used to teach moral values and preserve family genealogies. However, during slavery it was used by the slaves to express themselves in a world that treated them as a bit more than animals. Charismatic, non-fiction works have impacted and reflected the values of African-American communities until present day. Under a narrative ethics framework, examining the stories of any community (African-American or otherwise) can give insight into the value systems and point-of-views of communities. Examining (though not making assumptions about) the value systems and point-of-views of communities creates a better healthcare system from the inside-out. The diversity of thought this examination facilitates can make healthcare more tailored to a community’s needs. In light of this, here are a few highlights of the African-American healthcare experience.
- Segregation of Hospitals – Until the Civil Rights Act of 1964, hospitals in the United States could legally be segregated under Black Codes and Jim Crow laws. In 1959, 83% of northern hospitals and 6% of southern hospitals were integrated. In medical education, only 10% of northern hospitals and 6% of southern hospitals at the time took African-American residents and interns. However, some hospitals still practiced segregation in a more passive-agressive fashion. Some hospitals were integrated as long as review teams were in town to evaluate hospitals. Other hospitals would integrate restrooms, but would only give restroom keys to the white staff. It wasn’t until the passage of Social Security Act of 1965 that hospitals were forced to integrate permanently. This was because this Act required hospitals that receive federal funds to be compliant with Title IV of the Civil Rights Act.
- Unethical Human Experimentation – Unethical human experimentation has been prevalent in Black communities since slavery began in the United States. The book The Immortal Life of Henrietta Lacks and my blog post, Slaves Can’t Give Informed Consent, both address various instances of this. One of the most infamous instances of racialized, unethical, human experimentation is the Tuskegee Syphilis Experiments. Spanning from 1932 to 1972, poor, rural, African American males were purposefully given syphilis without being told or given curative treatment – even after penicillin was invented. A lesser known incident was the nonconsensual, whole-body, radiation experiments, sponsored by the Department of Defense, done on black cancer patients from 1961 to 1970. These incidents further fueled feelings of mistrust of western medicine in African-American communities.
- Historically Black Medical Schools – Howard University College of Medicine, Meharry Medical College, and Morehouse School of Medicine are historically black medical schools. Though founded at different points in history, these schools were founded with the purpose of educating and training African-Americans in medicine and the sciences. Howard University College of Medicine and Meharry Medical College were also founded at times when African-Americans were not accepted into most other medical schools. Not surprisingly, they actually trained most of the African-American physicians in the United States until the 1960s.
- Home Remedies and Alternative Medicine among African Americans – Due to a history of disenfranchisement in health care systems, African-Americans have a fertile tradition of using home remedies. A 2015 study was published analyzing the use of home remedies among elderly African-Americans compared to elderly Whites. The study showed that African-Americans were more inclined to use home remedies, such as vinegar, garlic, and Vicks VapoRub, than their white counterparts. An earlier study also found similar information – elderly African-Americans were more inclined to use home remedies. Some participants gave accounts of their family members teaching them home remedies and how they had been passed down for generations. However, this study also explored how religion and spirituality coincided with the use of home remedies. Several participants said that they were more comfortable using home remedies because they were natural and given by God. There were also statements given about God’s authority over the body as a whole and how they trusted Him rather than physicians. These same participants were not particularly enthusiastic about taking traditional prescribed medications.
Granted, this is just a glance at the narrative of African-American communities. Some people may ask why these highlights are important – after all, these events are historic and its effects are archaic. However, here’s some perspective. Both of my grandmothers were born between 1920 and 1935 and they still tell me stories that line up with these highlights. I was born in the 1990s and when I had a cold, I received home remedies (raise a hand if you have heard some variant of “Vicks and charcoal can cure everything”). We are not as far removed as we think. This is a valid narrative of a group of people receiving care in this country. This is not to assume that every black person would have this experience. But this is a healthy baseline for examining how narrative ethics can affect African-Americans. Let me know in the comments below what your narrative or family’s narrative looks like!
Ready to listen,
The Neighborhood Bioethicist