Angela Adler is a PhD student in sociology at the University of Nebraska-Lincoln. She is a part of the Health Policy Research Scholars Cohort 2018.
Before we begin, tell us a little bit about yourself and what your research interests are?
I’ve always known that we can make the world better for everyone by working together, and that knowledge is the basis of everything I do. I saw early evidence of this volunteering with my family every year at the Sports Jamboree, a camp for kids who use wheelchairs and kids who are blind. The Sports Jamboree is a universally accessible, free-of-charge camp put on in Pennsylvania every year by volunteers. To the contestants, it’s a utopic space where the world is shaped to them, rather than them having to shape to the world. I was, as many of us are, temporarily-abled-bodied during most of the time I volunteered there, but when I became disabled in early adulthood, having been around the folks at the Sports Jamboree gave me perspective. As I grow, I’m learning how to best care for myself, be interdependent with others, build communities, and create a world that works well for everyone. To create that world that works well for everyone, my research interests seek to identify the best society-level approaches to health, access, economics, gender, race, relationships, family, and community – the list goes on.
What’s the story behind why you’re doing what you’re doing?
You probably know at least one person who has severe pain or illness that no one can figure out the cause of, that no one can treat effectively, that they will probably have to live with forever. It might be called fibromyalgia, or migraines, or irritable bowel syndrome, or chronic fatigue, or something else. That person is probably a woman–mother, sister, partner, aunt, friend. They also may be a person of color, queer, gender-nonconforming,…That person might be you.
Studies show these diseases of unknown cause are disproportionately assigned to people who are most vulnerable in our culture. These diseases have existed for thousands of years, and no matter how much medical science advances, there has been almost no progress made on treating or preventing these conditions. While these diseases are presented as natural, since we do not know the cause, we cannot know that for sure. To at least some extent, these diseases are created from the marginalization of people by their gender, race, ethnicity, and sexuality. For instance, fibromyalgia, irritable bowel syndrome, and migraine are disproportionately diagnosed in women, and autoimmune diseases are primarily diagnosed in women of color. The number of people diagnosed with these diseases is only growing–up to over tens of millions of people. My research looks at how the field of medicine thinks about people with diseases of unknown cause, how this reaches across history, and how we can change the way we understand these diseases so that people can be healthier.
Tell us about a project you are currently working on that you are excited about?
Diagnostic categories are created by people. When it comes to diseases of unknown cause, however, very few people study them because it’s hard to study something that is unknown and poorly understood. My dissertation will examine characteristics of diagnoses as they are described on the CDC and NIH websites. I will be analyzing how the highest medical knowledge in the U.S. understands and describes the causes, treatments, prognoses, cures, and preventions of a wide array of diagnoses, including infectious diseases, genetic conditions, autoimmune disorders, and conventionally considered diseases of unknown cause. Then I will use statistics to look for patterns between those characteristics of the diagnoses, and the demographics of people most affected by those diagnoses. I hope that this research will show how we might shift research priorities in the U.S. to lower the rates of diseases of unknown cause.
For people unfamiliar with your research area, what is one piece of information you think is important for them to know?
There are many society-level issues that cause individual health problems, even though health problems may seem “natural.” To improve people’s health, we need to treat these social issues as the health issues that they are. Research shows that trauma, racial discrimination, gender discrimination, financial need, and many other social factors are associated with worse health. Then, as a society, we need to treat those as the health issues they are. For instance, the appointment of Kavanaugh to the U.S. Supreme Court, and the hearings that preceded his appointment, re-traumatized many sexual assault survivors, who suffered very poor health from it. The U.S. government, media, and politicians, however, did not treat this event as the health crisis it was. Policies that encourage racial and gender equity, deter rape and sexual harassment, and make sure people can have necessary resources no matter how much money they have, are all health policies.
Who is a researcher you admire and why?
I admire Black women researchers. They work in, around, through, and beyond a system designed to silence and denigrate them. And I am deeply grateful they persist, as they have profoundly insightful approaches and findings. Many times they are not cited for their work, such as Kimberlé Crenshaw when talking about intersectionality, which is why it is so important to #CITEBLACKWOMEN. Especially in the HPRS program, I am blessed to learn from and work with many Black women, who bring their brilliance, wisdom, perception, insights, and imagination full-force to everything they do.
How has being an HPRS Scholar helped you during your time as a doctoral candidate?
I am learning to frame my research on diseases of unknown cause for the consideration of policymakers, and identifying policy interventions that could broadly improve the health of the U.S. population in a lot of different ways. Through the HPRS program, I am beginning to work on a policy memo on this topic, which will help me better understand what policy could produce real change for the people most affected by these diseases.
My HPRS cohort has also been an incredible support, professionally and personally. There are no words.
Finally, the financial support of RWJF has changed my life, as it helped me escape abuse. Graduate students are extremely underpaid, and I had to flee a financially and emotionally abusive partnership. My HPRS funding has helped me make a safer and healthier space for myself and my family.
In the RWJF HPRS program we have worked with you to help you think further about using your research to develop policy. If you could use your research to change any policy, what policy would it be?
I am still learning about policy, so I’ll give my answer-in-progress. I’m identifying ways to improve the health of people with diseases of unknown cause through policy. One way to do that would be incentivizing research through NIH funding. Another would be to eliminate diseases of unknown cause as a legitimate diagnostic explanation in the NIH and CDC. Another would be to require medical insurance coverage of alternative and complementary medicine, as these approaches are more effective at treating diseases of unknown cause than mainstream medicine.
Ok, here’s a fun question to wrap things up. If you had a talk show, who would your fist three guests be?
I’m a theater artist so I’m going to go with the give-me-a-microphone-to-share option. One guest would be Eddie Izzard, a trans comedian and new politician in the UK who, after doing comedy about history and politics for years, just got very involved by running for mayor of London and serving on the Labour National Executive Committee. I’d also have N.K. Jemisin, a speculative fiction author with a background in psychology. Speculative fiction is a great way for activists and scholars to imagine different ways the world could be, and I’d love to get Jemisin’s insights. My third guest would be Dr. Jennifer Mullan, who runs the Instagram account @decolonizingtherapy. Dr. Mullan’s work highlights the role that society-level inequity has on individuals’ mental and physical health.