Everyone has a story, and each story is unique, intimate, and powerful. Our Narrative series invites you to step inside someone else’s life by reading their story, as told in their own words. Readers, please come open-minded and ready to engage in one of the many stories that makes our community complete. The following is the narrative of Dr. Carla Keirns, MD, PhD, a Professor of History and Philosophy of Medicine at KUMC.
What are three things that you’re loving right now?
The fall weather, because the summer gets pretty hot. This is the week of Halloween, so I’ve been preparing both for my little boy’s Halloween celebrations and also thinking about how to bring that kind of spirit into the classroom. And I’m really excited about some of the research I’m doing, looking at how to improve care for folks with disabilities who face health disparities.
Who are you? Could you give us a brief summary of your life so far?
I grew up in the Northeast, but my grandmother was born and raised in Wichita. My husband is an Ag School kid. His dad worked at the University of Missouri when he was little and then at Ohio State. And I have one little boy–he’s eight.
And I came to medicine, sort of circuitously. I majored in biology as an undergraduate, with a specialization in genetics. I took some classes in what at Cornell was called “Science and Technology Studies,” and the professor who most influenced me is somebody who taught us about how there’s a public policy debate about genetics and intelligence, basically, every 20 years. Soon as we’ve forgotten the last one, it’s time to have the next one. And I was really intrigued by that, and then there were a lot of new genetic technologies that we were trying to understand, you know, what would they mean? A lot of new genetic testing, amniocentesis, and the question of what could potentially be done in terms of things like fetal surgery. All that was starting to brew.
Also, I had a professor in college who was a theater professor and also a physician. He wrote a play that premiered during my undergraduate years called “Miss Evers’ Boys.” And it was a character study of the public health nurse at the center of the Tuskegee syphilis study, or the US Public Health Service study of untreated syphilis. And I thought it was incredibly powerful that he helped us see that good people can do bad things, for good reasons. And that if we want to make sure that we’re doing the right things, for the right reasons, we have to be really careful and really thoughtful. It’s not just that, you know, terrible people do things that really hurt others.
I went and talked to him and I said, “What you do is really cool. How do I get to do that?” He’s like, “I don’t know. I kind of found my way.” He had trained as an emergency physician, and then gone back to graduate school in theater. And I was like, “I think there’s an easier way now.”
So I ended up at the University of Pennsylvania where I did my medical degree and PhD in History, Sociology and Ethics of Medicine. That put me on the path toward the faculty job I have now, where I am a palliative care physician and Professor of History and Philosophy of Medicine. And the work I do sort of ranges from ethics to health policy to community-partnered research and outreach. It’s really wonderful to be able to take both the basic science that we learned in medical school, and how we understand how our society is structured, how our world works, how people get or don’t get the resources they need, to figure out how to make it work better for people.
What passions and obstacles do you feel like really come up with advocacy? What’s something that keeps you going?
Advocacy for individual patients or for people that we know and care about, and advocacy for systems change, to make things work better, I think have to go hand in hand. You can’t make the systems work better if you don’t know how they’re impacting individuals. And you can’t really do your best work for those individuals if you don’t understand how the system is structured.
My older sister has autism. I wouldn’t say that what I did as a kid was advocacy, but I did learn how to navigate the playground and the school bus and the environments in which we were there together and I was trying to figure out, “Can I make this situation any better?”
And my son is in elementary school. Figuring out how to get him the medical care he needed was pretty straightforward, but figuring out how to get him disability support, special education, a lot of those other things that are outside the healthcare system… I just had to understand how those systems worked.
One of the things that [social media] has allowed folks to do is find people who are facing the same challenges you are. When my mother was trying to get special education for my sister, she was on her own. When I have a question, one of the first places I go is the National Organization of Parents of Blind Children or the National Organization for Albinism and Hyperpigmentation. They both started with basically mimeograph newsletters in the 1980s. Now, we’re much more able to stay in touch with each other, learn from each other’s challenges and struggles, figure out how to advocate more effectively both at an individual level and at a systems level, because we have each other.
Just literally this morning I was corresponding with a physician I know in Chicago, who has a patient who suddenly lost her vision, and she needs help accessing the kinds of systems that I’ve been learning how to access for my son. She reached out to a larger Facebook group that we are both part of, and I said, you know, we need to get together because I can help you. I think that part of it is being strategic about what are you looking for and asking for, and a part of it is, again, figuring out how does this system work? And if the system is broken, what could make it work better?
It sounds like you do a lot of community-building work, whether you started out with that intention or not…there’s also this sense of exhaustion that comes from getting up and doing it every single day…and a uniquely emotional component, too, because this isn’t just somebody, it’s your son.
I was talking recently with a gentleman who is completely blind since birth, who’s been doing disability advocacy since the 1970s. He was telling me he was a little discouraged because some of the challenges that I faced in getting help for my son are not that different from ones that he saw in the 70s and 80s.
And I said a couple of things: One, I’m not as old as he is, he’s in his 60s, but I watched my mother try to figure out how to get the supports my sister needed, and I know it’s better than it was then. I know, because I know what challenges she faced. Some of the differences are, that it’s so much easier to connect to other people in your situation, but some of it is some of the advocacy that has been done over generations, the laws are better, everything from the Americans with Disabilities Act to the special education laws to, to a variety of other civil rights agencies and laws and strategies. It really is easier to help people reach their full potential than it was in the 70s.
But I also said to him, you’ve been fighting these battles since I was in elementary school, and it’s okay, if you want to take a break. But Monday, we storm the castle. And if you aren’t up to coming this time, can you at least lend us the map? Because he knows a lot about strategy. He’s been doing this for a long time. And yes, it’s discouraging. I hear the same thing, from, say, Professors of Special Education who’ve also been pushing from the inside to change systems.
But we can all agree that there has been progress, and that the only way forward is to keep looking at what can we do? And if you are doing it for work, or you’re doing it for you, it is really easy to get discouraged. But I have to do it again tomorrow, because my little boy needs me and all the kids like him need things to be better. And so you want to both take a step back and make sure that you’re caring for yourself, and that you’re using your resources in as strategic a way as you can. But at the same time, ultimately, having a child is a very forward-looking experience. You have to make the world a better place for them. Because what else are we doing here?
What makes you think of a legacy or this forward-thinking kind of stuff? Is it partially motivated by all of the professors from your past that inspired you, and you want to be someone like that for someone else? Is it for your son? Is it for your patients?
It’s all of those.
I definitely have in mind professors I had who I would love to be like. I think that that’s really powerful, because even if you don’t know their whole story, it helps you imagine what’s possible. And then, of course, you know, making a world in which all kids can prosper and thrive is important.
But I’m thinking about something I did when I was kind of in the middle of my training path. I had finished my PhD, and I was about to finish my residency. I talked to all the people who I knew well enough to ask, who had jobs like the ones I would want. I asked them about their paths. And here’s one tip: so all the advice could be divided very equally, very evenly into do what I did, and don’t do what I did. And that piece of the advice is of course not that helpful, because you’re not them. But why did they think that what they did got them where they wanted to go? What were the opportunities and the challenges that they faced? How did they think that those things helped them get where they wanted to go, or change where they wanted to go? And that was incredibly enlightening, because it’s easy to follow this standard path.
You have to work really hard, you have to have started with some advantages. You know, nobody got to med school without working hard. But if you want to do something different–maybe you want to do public health, maybe you want to do medical ethics, maybe you want to be a health communicator, maybe you want to run for office–knowing what what paths other people took that got them to those places, is really the best way to figure out what do I need to be doing now to prepare for the next step?
You did touch on the advice portion, to some extent, when it comes to, you know, how do I or one of the listeners get to maybe where you are right now. Tying that into your work–the research stuff you do, the ethical things you do, the advocacy work that you do–what are things that you want medical students to know about what you do? And what are some things that you want parents to know about what you do?
I want medical students to know that they’ll be able to use their skills in a variety of ways to be of service to their community, of service to their patients, and to their families, that the clinical work in our healthcare system is really important. But it is not the only way to contribute. And in particular, I have seen even students and residents make changes to law and policy by gathering together and advocating.
And what I always tell parents of kids with disabilities is that your kid is special. Everyone’s kid is special, of course, but your kid really is special. And what I think is the superpower of Special Needs Moms is looking at a situation and saying, “Well, I don’t know what the answer is. But that’s not it. And I’m not leaving until we have a better one.”
I literally had a patient who would get fixed up in the hospital, get discharged, and her insurance would refuse to pay for the medicine that she needed to not end up back in the hospital. And she ended up back in the hospital. And I talked to her, I talked to her mom. And they were like, “Well, what am I supposed to do? The insurance said no.” And I’m like, “I totally get it. You’re totally right, the system is broken. It’s not fair.” And the fact that the insurance said no is a problem, and it’s happened repeatedly.
But I also called one of the best disability advocates. I said, what this family needs is a Special Needs Mom, who says, I’m not leaving until we have a better answer. And I think that that is such a critical skill. But it also turns on what you pointed out earlier, if you’re dealing with repeated barriers, it’s easy to get discouraged. And that’s where having peers and others who have been in that situation who can say, “I know it’s terrible. But we’re going to get up. And this is what we’re going to do next.”
And so in some ways, I think that the journeys are parallel, the students all face challenges in their paths and have to think about “what’s really important to me?” If you think about what’s happening in our society at large, everybody’s starting to think, wow, “You only live once, what is important to me, and what are things that are not worth it?” And so I think that both groups really benefit from those kinds of perspectives.
I think that’s really one of the core takeaways, I think, from our conversation, is community building will keep you strong in a world that it’s easy to feel weak in. Any final words of wisdom for us?
I’m always encouraged when I meet with students because you guys remind us why we’re doing what we’re doing. When I worked in the free clinic, at my last job, every Sunday, when I would go, I’d be like, “Why am I doing this again?” And then I would get there and you guys are so excited. You want to learn. You want to do good. You want to help the community. So it’s not just your peers, but those relationships, help us all to do a better job.
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