Bioethics Forum Essay
Improving Linguistic Justice and Accessibility in Bioethics Work
Justice, and its many explanations, conceptions, and applications, is a prominent fixture in bioethics. We wax and wane about its theoretical and practical meanings; we use it to take a critical lens to health laws and clinical policies and we use it to measure society’s impact on our health. During the Covid pandemic more attention than ever was given to health justice and what is required of us to work towards health justice for all people.
The principle of justice, however, is not a casual principle; principles rarely are casual. Justice requires intention, effort, and deliberation. Similarly, justice requires more of us than only applying the concept to laws and policies and to other people’s work. Rather, bioethicists have to start asking, “How are we applying justice to ourselves and to our own work?” One way that I practice an elevated sense of justice in my own work is by practicing linguistic justice. I especially made this effort in my latest book, Black Health: The Social, Political, and Cultural Determinants of Black People’s Health.
To me, linguistic justice means making my work accessible to people by using relatable language to spread bioethical knowledge. It’s about acknowledging that some of the terms and words we use in the academy and with our academic peers can be isolating for others who deserve and sometimes even need to hear our work. In my published work, including Black Health, I have made an effort to describe the ways that racism and its intersection with other forms of discrimination within institutions (like education, economic, heath care, law, housing, and environmental policy) can lead to bad health for Black people. I relay this information and critical analysis of Black Americans’ health using real testimonies from Black people who are telling their own stories of poor health.
For example, I retell Alexandra Moffett-Bateau’s story of seeking care for her chronic pain. In Moffett-Bateau’s own words, she tells the story of how multiple clinicians in multiple states did not believe her when she told them she was in extreme pain. Even though she had many kidney infections, fevers, and joint pain, clinicians thought she was just trying to get pain medications. Instead of believing her and looking for the cause of her pain, physicians would refer her to a psychiatrist or therapist, assuming she was faking her pain or that her pain was “all in her head.” Eventually a physician diagnosed her with lupus, but even with this diagnosis some physicians refused to treat her pain and, even when physicians prescribed pain medicine, pharmacists would often question the legitimacy of her pain before fulfilling her prescriptions.
I use Moffett-Bateau’s story to describe how racism and sexism within health care leave many Black people without proper care for their pain. I also inform readers about the many studies and other types of research that show Black people’s pain is taken less seriously and treated with less urgency than White people’s pain. I prefer to use stories that are emotionally connective and humanizing, like Moffet-Bateau’s story, and then supplement them with the research that uses data to show that these stories are not unique or just one person’s story, but rather that they are common among our friends, family, and colleagues.
Linguistic justice sometimes gets called “dumbing down,” or is considered not academically rigorous. But this sentiment remains a barrier to justice in our bioethical work. Indeed, when I was training to be a bioethicist I was discouraged from writing in this manner. I was warned that people may think I am not as smart as my peers who use more so-called sophisticated language. But what I found is that writing in an accessible way is a skill, and a skill that some of the best trained and most well-known bioethicists do not have, possibly because they also were discouraged during their training. Linguistic justice requires intention and dedication. It is not something that comes naturally nor is it a standard part of our bioethical training. It’s a skill that has to be developed.
Linguistic justice is not dumbing down our work. Making our work accessible to as many people as possible, however, is acknowledging that justice is not just an abstract principle or a standard by which we judge our institutions, systems, or political leaders. Justice is also a principle we have to apply internally; we have to hold ourselves accountable for justice in our work. And it starts with how we write and whom we write for. This is especially true for topics related to health equity since so many of the least well-off people among us do not have access to the resources for proper health, including health care. We cannot continue to say that we care about justice and concern for vulnerable populations yet write in a manner that only a person with a graduate degree can read.
As a matter of linguistic justice, I also wrote Black Health with short chapters (no more than 10,000 words each), many section headings, and study questions. The chapters can be read independent of one another. Chapter One sets the tone for the book with discussions of basic terms and ideas like institutional racism, structural racism, racial disparities in health, social determinants of health, what it means to say that race is a social construct, and other foundational ideas needed to better understand how racism in our social lives contributes to Black people’s generally poor health.
Justice as a principle for bioethicists should not be taken lightly. But there are practical barriers. Our employers have to recognize the value of accessible writing and reward our work with promotion and tenure. Currently, it is not common for universities to give equal value to publications in peer-reviewed journals and publications in popular news outlets. New professors are often told to focus on the former and do the latter as a side project. But popular news sources, podcasts, local TV news, and local radio stations are great sources of public scholarship and often reach a wider audience than our academic journals. Not engaging these sources of knowledge distribution is a missed opportunity to extend the principles of linguistic justice and share our bioethical knowledge.
Publishers also have to be willing to give us book contracts for work aimed at a broad audience and market it in a way that highlights this valuable feature of our books. Academic journals must have a deeper appreciation for linguistically accessible articles and their value for the profession and the general public. Additionally, allowing free access to these articles or charging authors and institutions a reduced fee for publishing them can aid the goal of linguistic justice–to give bioethical knowledge to more people outside of the academy. Bioethicists also have to be taught how to publish in popular news outlets and again be rewarded for it with the typical spoils of academia.
We cannot assume that our graduate education and professional training has prepared us to write accessibly. Writing in an accessible manner requires effort and practice; it is a skill that must be intentionally cultivated. But we must try because the principle of justice is a demanding one. And it should be. Justice requires that we hold ourselves and our bioethical institutions to high standards. As we call out unjust systems and develop standards for just allocation of health and health care resources, we also have to look inward. We have to continually challenge ourselves to have the courage that the principle of justice requires of us. Hopefully, we will accept this challenge and show it in our linguistically accessible bioethical work.
Keisha Ray, PhD, is the John McGovern, MD Professor of Oslerian Medicine and an associate professor at the McGovern Center for Humanities & Ethics at UT Health Houston where she also serves as the Director of the Medical Humanities Scholarly Concentration. She is an advisor to The Hastings Center’s Sadler Scholars, a select group of doctoral students with research interests in bioethics who are from racial or ethnic groups underrepresented in disciplines relevant to bioethics. @drkeisharay