Life isn’t fair—often said to explain away a perceived injustice, like when Steve cuts in the cafeteria line and takes the last chocolate muffin. Then there’s the more serious side—tragedy and disease. For Carey Gleason, the question of fairness isn’t answered with acceptance or indifference, but with honesty. Why is this happening? Does it really have to be this way? Am I in a position to do anything, and if not, how do I get there?
“I’ve been accused of being moralistic,” says Carey. “It comes from a pressing need to be fair. I grew up number eight of nine children. I think what happens when there’s a scarcity of resources, you get obsessed with fairness.” Since fairness tends to be a moving target where today’s justice is yesterday’s -ism and vice versa, the approach to rectifying fairness has to be as flexible as the definition.
Flexibility, however, doesn’t mean drastic changes. It’s more incorporating new schools of thought and levels of awareness. Carey remembers past events involving moral wrongs, many of them going back to her childhood. “I was in the sixth grade, and a brother and sister were getting bullied on the bus. They would get on the bus, and they were terrified. The brother was a kindergartner and the sister a first grader. The bully was probably in fourth or fifth grade. God knows he probably had his own struggles, but for some reason, he decided to pick on these kids. I did the whole anti-bully thing before it was a thing because it was just not right. That kind of stuff, that just gets me. Moralistic, I know, but I have more than once stuck my neck out when it would’ve been smarter for me not to.”
Acting in accordance with her heart is something imparted onto Carey by her mother. When Carey was young, her and her siblings would ask who the favorite was. “[My mother] never was tempted to be nuanced in her answer. Her answer was always just this categorical, ‘I don’t have favorites.’ Now, being a mother, I understand that you love your kids equally and differently.” It’s not about the political answer, it’s about understanding part of herself. “I have a daughter and a son, and I’m so proud of both of them. I like to say I take no credit and I take no blame. I love them.”
Carey’s mother and family also serve as inspirations for her work. About five years ago, Carey’s mother was diagnosed with Alzheimer’s disease dementia. It tied into Carey’s training as a clinical neuropsychologist. “I was trained to look at brain-behavior relationship in the context of aging, so the two together end up directing my career and my efforts toward dementia. … The niche that I fill is tied into my interests in justice and equity. When you look at the data describing who gets Alzheimer’s disease dementia, there’s higher prevalence in groups that are, unfortunately, underrepresented in our research.”
I won’t do justice to the body of Carey’s work here, but in a glued-together nutshell, Alzheimer’s is almost exclusively studied in highly educated whites living near academic medical centers. On average, this demographic tends to have cleaner cases of Alzheimer’s with less complicating factors outside the disease when compared to their counterparts, limiting the ability to understand the disease as it presents in the majority of cases. Compared to black participants enrolled in the center network, white participants enrolled in the national network of Alzheimer’s disease centers appear to have more aggressive forms of Alzheimer’s disease dementia. The question to Carey became whether or not the studies were overlooking treatments that would be effective in the general population because they fail in the more advanced cases.
Think of it in terms of something like aspirin never being discovered. Because no one has thought it was important to further investigate how to treat minor headaches for whatever hypothetical reason, we’re stuck with something like the highly addictive codeine for incidents that really don’t call for it. How many people would want to pop a Vicodin when they have a minor stress headache?
Privilege defines a large portion of Carey’s empathy. She wants to use her position to break down barriers to access not just in research to help underrepresented demographics, but for her clinical and research trainees. “They should feel valued and able to work to the top of their potential. And how do you make that happen? You make sure that they feel safe enough to actually take chances and risks. Not everybody will be able to perform equally well in a situation, but they should be able to work to the top of their potential.
“I think if people were creative in thinking about who they put forward, who they promote in whatever world they work in, and making sure they promote diverse voices—that they’re inclusive, thinking outside the box in terms of what they do—that to me is justice and fairness.”
To get into the position to help others, Carey says, “I had a lot of help along the way.” Carey had been on three different promotion tracks in the field of psychology at the University of Wisconsin–Madison, one after the other, over the course of her work before Dr. Molly Carnes, Jean Manchester Biddick Professor of Women’s Health Research and director of the Center for Women’s Health Research at UW–Madison, suggested a better direction for Carey’s career. “Molly was hugely influential in sponsoring me. She’s the one who first said to me, ‘Why not reach for it?’ … During a faculty meeting, she looked at my CV and spoke up, asking her colleagues to consider, ‘Why is Carey not on the tenure track?’” It’s made the difference in Carey’s work and her ability to promote those coming up behind her.
After all Carey has acquired from those who surround her professionally, her drive for personal growth still comes from family. “My mom is a big motivator. She’s very sweetly confused. I don’t want her to suffer, but there’s something about it that has just stripped away all of her agendas, hurt feelings, and grudges. She is who she is in the moment, and it’s just this pure goodness. … You’ll say, ‘I love you,’ and she’ll always say, ‘I love you more.’” Her mother’s daughter, no matter how much Carey does for her children, her husband, her colleagues, or her trainees, she’s always asking herself, “What more can I do to help?”
Kyle Jacobson is a writer and copy editor for Madison Essentials.
Carey Gleason, PhD, is an associate professor with tenure and a clinical neuropsychologist at the University of Wisconsin’s School of Medicine and Public Health whose research interests stem from her desire to improve diagnosis and treatment of Alzheimer’s disease and dementia for all individuals, including those traditionally underrepresented in research.
To learn more about Carey and her work, go to medicine.wisc.edu/people-search/people/staff/408/GLEASON_CAREY .