Dr. Paige Terrien Church is a neonatologist and a developmental-behavioral pediatrician at the University of Toronto. As the Director of the Neonatal Follow Up Program, she is able to connect with her young patients on a very unique level through shared experiences. This episode of the #DocsWithDisabilities podcast features Dr. Church’s journey through her training and career as a physician with a disability. The discussion stems from her 2017 publication in JAMA Pediatrics, titled “A Personal Perspective on Disability: Between the Words,” in which Dr. Church publicly discloses her disability and calls upon the medical community to change the culture of medicine to one of “respect, awareness of stigma, possibility, and honesty” for people with disabilities.
Episode 19, Transcript
DocsWithDisabilities Podcast #19
Introduction: Lisa Meeks
Doctors with disabilities exist in small but measurable numbers. How did they navigate their journey? What were the challenges? What are the benefits to patients and to their peers? What can we learn from their experiences? My name is Lisa Meeks, and I am thrilled to bring you the DocsWithDisabilities podcast.
Join me as I interview Docs, Nurses, Psychologists, OT’s, PT’s, Pharmacists, Dentists, and the list goes on. I’ll also be interviewing researchers and policy makers that ensure medicine remains an equal opportunity profession.
Welcome to the DocsWithDisabilities podcast. My name is Kate Panzer, and I am an MDisability research assistant at the University of Michigan.
On today’s episode, we will explore the topic of disclosure. Research has shown that the decision to disclose a disability is complicated, partially due to stigma and fear of repercussions and threats to one’s career. Today, Dr. Meeks engages with Dr. Church about her experiences with publicly disclosing her disability. How did her peers and the broader medical community react? And how has her experience as a person with a disability impacted how she works with her patients? Please stay with us to find out.
Welcome to the podcast, Dr. Church. It is such a pleasure to catch up with you. I want to thank you for coming on the show. Can you tell us a little about yourself and your disability?
My name is Paige Terrien Church, and I am a neonatologist and a developmental behavioral pediatrician. And I work at the University of Toronto in Toronto, Canada. I also happen to be a physician who has a form of spina bifida.
So, for many, many years, I mean, obviously my whole life, I've had a form of spina bifida that in and of itself should not be as significant or difficult to manage. But when I was born, they did not have imaging or the ability to understand what type of spina bifida I had. And so as an infant, when they went in to do exploratory surgery, they transected part of the cord. It left me with more deficits than perhaps I would have had if I was born today. Regardless, because you don't necessarily see it unless you know about it, throughout my medical school career and my training, I lived my life fairly quietly. I mean my colleagues did know, cause I'd have surgery here or there, but I very much tried to live my life in a way that, I had no accommodations. I had nothing. I mean I didn't do less call. I did everything everybody else did, if not more. It was only as I became a senior mid-level career staff person that I felt that these words needed to be said and they needed to be written down and the weight of not writing them was becoming more and more unbearable to live with.
As you know, I got to know you as a result of reading your On My Mind opinion piece in JAMA pediatrics. The article really struck me, and I think for most readers it would make them take pause and rethink disability inclusion. You say,
“My medical record misses features that truly define me: physician, wife, mother, sister, daughter, mentor, and friend. Without my medical record, most would not recognize the challenges; the scars are well hidden and my medical regimen is tightly controlled. However, the effort to appear “normal” is exhausting and isolating.”
Wow, those are incredible words and we’ll get to more of your article in this interview. But your writing is so elegant, and I could almost feel the pain you were experiencing. What made you write this article and were you afraid that ‘coming out’ would negatively impact your job?
So I wrote that editorial sitting at the counter right after Christmas. I remember the day so clearly and it was just like I couldn't do anything else but sit down and write it. I had been thinking about it for a long time and that was the day I just put it into the computer, but then I hid it. So I didn't release or share that editorial with my husband, with anyone in my family. No one saw it until the following summer. So six months I sat on that editorial. And interestingly, the colleague that I chose to first share it with was a woman I had never met in person but I admired deeply. And it was shared almost in a desperate way because I had begged to be a part of a research trial with her, and then the first meeting I had to bow out of because I had a spina bifida consult I had to go do. And I found those challenging and stressful in and of themselves, but because of the timing, it meant that I couldn't go to this meeting. And I felt like, here's one more example of this unknown condition causing trouble and making me look, you know, quote unquote flaky, unreliable. And it was just for whatever reason, it was the one person I just couldn't bear to have her think that I wasn't committed.
And so I said, you know, I'm sorry I'm not making this meeting. I have to go do a consult, and I find them very challenging. And she responded with a piece that was awaiting publication that she had done on spina bifida and parents' perspectives. It was a beautifully written piece, and that's part of the reason I had admired her so. And so then I sent one back and it was the editorial, and I said, this is why I find it challenging. And then she emailed back, it was like literally, you could count the seconds of how long it took her to read it. She emailed back and she said, this must be published. We must speak. And it was this external validation from someone that I had long admired, I didn't know, who heard my words that were so incredibly private and sensitive and delicate. And she validated them and it gave me the confidence then to send it. But when I sent it to JAMA Peds, in my letter to the editor, and I would never do this, ever, ever, ever. I wrote to the editor, please do not criticize this piece. You have every right not to publish it. But I don't think my soul could bear criticism. And I mean, I've never like… who said that to an editor?
Publishing a personal story requires vulnerability and courage, so I want to first thank you for taking that risk and sharing your story with our listeners. I’m also very thankful for the journals that publish and support this type of first person narrative, because it allows us to connect with others on a more personal, humanistic level. And I think it provides a platform for discussing what may be considered a more sensitive topic. It also allows the listener to gain some perspective and challenge their perceptions about what it means to be a doctor.
Yeah. And I mean blessedly they just said if you could just carve off like a hundred words, we're good. We're going to go with it. But it was so delicate. And then only after those two people who I had never met, I then showed it to my husband. And I remember we were sitting at the cottage on the dock and I went and got it and I brought it down and he read it. This is the person I think has been the keeper of my secrets. Like he's been my partner. He has been the person who's covered up for me when things haven't gone right, when I haven't been able to do something. And he looked at me and he said, are you ready for this? Are you ready for what this may cause? So even he saw how fragile this was and how risky it was to go public.
We sat there for a good hour and then I finally said, I think I can't live with myself if I don't. The weight of keeping the secret is starting to eat away at me. And I think what had really bothered me as well, I had made him complicit in it many years before when we first got married. And it isn't intentional. It just becomes the way you live. It bothered me to see my daughter emerging as someone who was very complicit in the whole thing. And it became this family deal that we were all sort of running around making everything look normal, quote unquote. And that really was bothering me was to see how it was affecting life. And so that was where we both said it's time. It's okay.
Going back to your article, which I encourage all of our listeners to read, you write, “In medicine, I also learned that disability is not well tolerated. While inaccurate, the messaging linked quality of life to a problem list; the longer the problem list, the more compromised the quality of life must be.” Wow. Given this perspective, did you experience any pushback on sharing your story? Or coming out to the world that you were indeed a person with a disability?
In the past, I had batted around the idea, you know, there would be moments, it was sort of like there'd be peaks and valleys. And at some points in my career I would say, Oh, I'm just going to write this and enough already. People just need to understand it. And I was told repeatedly, don't. You don't want to bring this attention.
And some of those people who discouraged it have never acknowledged that they read it, which I've also found very difficult is, people I admired and enjoyed working with and really respected and have taught me a lot about interventions for disability, ways to make function more optimal. A lot of the medicine that I've learned about taking care of children with disabilities, I've learned from, and there's one person in particular, but to not have that person acknowledge that they ever saw the editorial, which I'm pretty sure it crossed their desk. And, you know, I did a radio interview shortly after in Canada and that got a lot of attention from peers in my workplace. And to have never had that person acknowledged that they heard the interview, it would be very unusual to not have heard about it from someone. So it is interesting how some people really don't, for whatever reason, see this as something that should be discussed and don't want to acknowledge it.
Dr. Church, I am so personally grateful that you’re willing to speak up and share your personal experiences. I know that these stories also mean a great deal to the listeners who, themselves, are often medical students with disabilities grappling with the very issues that we discuss on this show--especially when it comes to disclosure of disability. It is my hope that through these shared stories we can dismantle this veil of secrecy and shame that has been encouraged for so long.
I wonder if we can move our conversation to the clinical aspect of your work now. As a neonatologist and a developmental behavioral pediatrician, can you share with our audience how your personal experience with disability informs and enriches your clinical practice?
When I started practicing, my whole practice, I mean going into medicine was driven by my experience in the healthcare system and my drive to try to make what I had experienced to make sense and to try to use it for something that would be positive. When I moved to Canada from the U.S., there was an opportunity for the spina bifida clinic to be taken over because the man who ran it was retiring. And so of course I immediately snatched at it and said I would take it. I had no experience in spina bifida other than my own, which is a bit naive.
And over the years, I watched my children struggle with the same bias and stigma that I was struggling with. I listened to colleagues talk about the condition in ways that I wouldn't use. Negative words. Well they're just not trying hard enough. If they were more committed to this, and I would sort of remind my colleagues gently, of course, at that point, I may or may not have been out of the closet. Certainly early on, I was not. I would say, you know, perhaps they can't try, perhaps they don't ever understand what the signals are. So I think it definitely gave a more intimate perspective on what these children were struggling with. And I also felt like it gave a much more intimate piece around the social pressure and how deeply that can drive behavior.
And so with parents, you know, I would sort of say to them, I understand it doesn't make sense to you that she doesn't eat all day at school, but I think it's actually incredibly adaptive. And while not successful and somewhat maladaptive in terms of her health, I saw it as a child desperately trying to succeed with what she could. And so I feel like it gives you a more intimate understanding of what the children are struggling with and then how you can step in and try to change it because a lot of the patterns were similar to things I had already done. And I could sort of see that the long game on that pattern wasn't necessarily going to be successful, but the short game seemed highly rewarding.
So being able to talk to a child, but then it meant very discretely disclosing to that child, you know, closing the door. I always kicked the trainees out. I would always ask them to leave and go do something like go do paperwork. And then I would say to the child, okay, listen, I have the same thing. I've done the same things. Let's talk about how we can make it work. Because what you're doing right now is working today, but in the long run it's actually gonna make it harder. And you know, sometimes the kids weren't really receptive to hearing it. More often than not though, it really broke down a barrier and they were much more honest about what was really going on because they didn't feel the same level of shame and embarrassment when you could sort of say, I've been there and that's happened to me and let's figure it out. Come on. Like we can figure this out.
Especially with spina bifida, because the condition the ambulation part of it is what everyone thinks about, but it's the continence and the social continence piece that is so life altering and changes your social ability to be involved with people and be participating in things. And that's the piece that is so stigmatizing as well, because nobody wants to disclose that that's what they're struggling with. But I think, and I hope that by being honest about the fact that it's not just that one person's struggle, that we can then find a way to make it a little bit less personal and a little less stigmatizing and humiliating and just focus on let's get through this and let's get to the medicine of it and figure it out. And remind the parents that this is not bad behavior. It's not lack of effort or lack of engagement. It is a complete disability that needs to be attended to in the same way as mobility.
There was one, I think particularly ripe moment where I got right in the face of one of the colleagues who I really like. He's a lovely man. But, you know, he was probably having a day and I don't really know how aware he was at that point about me or not. But you know, he walked out of a room and he'd spent about five minutes, and there was the family and you know, quote unquote, the child wasn't being compliant with his medical management. So he wasn't going to do any more. He wasn't going to offer any bigger opportunities like surgery because if they couldn't be compliant with medical management, why was he going to offer to operate? And I got right into his face. I mean, it was like pretty heated. And I said, you tell me how many times would you be compliant with what you're recommending if you had an accident at work? Once a week? Twice a week? I said, what would it take for you to stop taking the medicine and say, this isn't working? Like I think that kid's a genius. They're not noncompliant, they're surviving. And he turned around and went back in the room.
I feel like because this is such an unspoken thing, that it becomes harder and harder and the kids become more and more disenfranchised from the medical system because it's not working. And I mean anyone who's been in the medical system and it doesn't work for you, you don't keep going. That's where I do think having physicians with disabilities does make the medical system richer because people who are experiencing these conditions who have the opportunity to meet someone else's who is and can provide answers and insights into how they can live better, you know, that's what people are looking for.
You mentioned that as a trainee and for the majority of your career you didn’t request any accommodations. So often, programs equate accommodations with a reduction in the rigor of medical training or practice. Accommodations can also simply be ‘tolerated’ and offered to ensure legal compliance. I’m wondering, can you discuss your perspective on accommodations for Docs with Disabilities and how this might have evolved over time?
When I went through training, there wasn't any discussion about it. I mean, I didn't know anyone who had any accommodations. And when I had to have surgery, I mean, the program was very adaptive. I mean, I will say my residency program was great. You know, they found ways to not have me take a lot of time off and they gave me reading electives while I was on my back in the hospital and unable to stand up. And I graduated on time. So my residency program tried as well as it could to be as accommodating as it could, especially with someone who demanded nothing. Not only did I not want accommodations, I would drive myself out of my hospital bed and show up for morning report because I was so desperate to be a part of the learning and the program.
And I think that's where people make mistakes. At least in my opinion, individuals with disabilities don't want to get out of things. They actually want nothing more than to be a part of the things that are going on. But whatever may be the obstacle, may be time consuming, may be energy consuming, that's where the accommodation should come into play. Not that they're being rewarded for not doing something, but rather they're being given an accommodation to account for the extra time or energy it takes to do it. Because I have not met someone yet who has the lack of passion to do whatever they're doing. You know, and for me, when I finally asked for accommodations at work only a couple of years ago, it was very reluctantly. I love what I do. I didn't want to give it up, but I started to feel that it was unsafe for my patients to try to do it and do everything else. But instead, what I've done is I work twice as hard in every other way. So I don't see that I'm getting a hall pass. I see that I am being accommodated for the one thing I need and my work is being redirected into the things that I can do and I do well.
I do think there's an element of hypervigilance and a desperate awareness that I can't afford to fall down or to fall flat. And I mean figuratively. When I decided that I didn't think I could do night call because I was tied up doing stuff around my disability for several hours every night, I thought about it cause it did come up one night where I was asked to come into the hospital and I was midway through and I couldn't leave for about 45 minutes. And, you know, our rule is that we have to live an hour from the hospital. I lived five minutes from the hospital, so I would have gotten there easily within the hour. But because I knew that my standard practice was, I would have been there in five minutes, not in 50 minutes, it really weighed on me that I wasn't doing the job I thought I should be doing. I wasn't comfortable doing a job that wasn't the job I wanted to do. Even though that's the standard, that was not a standard, I could accept for myself. So I think the misunderstanding is that somehow individuals who have disabilities are going to take away or be an extra drain on the medical system. I would argue more often than not, the standards that we set for ourselves are higher than the standards that are set by the arbitrary bodies and are harder to live with when we can't meet them.
I would agree with this assessment. In the hundreds of interviews I’ve conducted, I find that most doctors with disabilities have set up internal safety checks that go above and beyond those implemented by the health system or even by their specialty. I wonder if you can share your experiences with medical training prior to your disclosure and reflect on how your mindset has shifted since you disclosed?
For me, there are two sort of phases to this. There was the phase where I obviously had the disability, but I was, I guess the duck phase where I was trying very hard to pretend it didn't exist. You know, everything looked fine above the surface. And underneath I was frantically paddling. And during that phase of my career, I felt blessed to have the disability because of the insight and the perspective it gave me. It gave me incredible direction and passion. You know, I watched my colleagues go through residency and residency is hard, medical school is hard. And it is draining. And while I definitely felt tired and I felt drained, more days than I could ever count than not, I got up every day with this incredible passion that I was doing what I needed to do and it was this deep drive to be a doctor. Like it was so profound.
And so while I watched my colleagues sort of struggle and break down and stuff, I never really had that moment where I broke down over the work. I might've had breakdowns over an interpersonal conflict with a nurse or something, but never with the idea of what was being asked of me. I wanted to be a doctor so badly and I credit my medical condition and my experience as a patient with driving that. So when I was in the duck phase of my career in hiding that I had a disability, it provided me with a passion and a motor that was unstoppable. When I wrote the JAMA piece and I sort of came out of the closet, you know, now I'm hearing all this stuff about mindfulness and physician burnout and how stressed people feel.
And I mean, yeah, I do have moments where I get tired and I get tired of work and stuff, but I feel like the weight that has come off of me by being my true self has been so liberating that I'm generally much happier. I don't feel like I'm constantly covering up. I feel like when I say I have to do this, I no longer have to lie about why. And that just in and of itself is so peaceful for me. I walk 10,000 steps a day and that's mainly to maintain my legs and let me be able to get up the stairs to go to a code or and not fall down. Now everybody knows, you know, at 5:30AM they're like, what'd you see on your walk this morning? Those walks are incredible for my mindset, but it's also really liberating that people seem to enjoy them.
And I hear people saying things like, Oh, I should really do that. I should get up and do that so that I feel so clear headed in the morning and my day starts off so peacefully. But for me, the disability drags me out of bed for somebody else, there are 15 things that they can't do it for. And so in some ways I find that my colleagues are many ways more disabled than I am because they're struggling with not taking care of themselves, not listening to their own bodies, putting everything else first. And with my condition, that's no longer a choice. I fell up the stairs and down, but up now more times than I care to count. And I know I'm going to hurt myself. So every day I get out of bed, rain, snow. I already did my walk today. But you know, an hour of walking is amazing for your mental health.
In two different ways, there was the hiding phase and now there's the being out in the open phase, and both have provided me with incredible gifts that I would never not want. As much as there are days where I hate the condition and I am frustrated, if I didn't have it, I wouldn't have probably my career, my mindset, my passion. I wouldn't have my husband probably, my daughter, the life I have. So they're so interwoven that there's no way to separate the negative from the positive because the negative created the positive and the positive has fed the negative. Like they feed each other and I can't complain. It's been an incredible compass. I'm lucky.
ADVICE FOR ADMINISTRATORS
Going back to your article, and again, I um… your article moved me to tears. I felt every word. It was raw, vulnerable, beautiful. You write, “ I acknowledge that I do not have the right answer and I feel differently day to day sometimes hour to hour, about my condition, but I have also learned that medicine over-simplifies the discussion of disability. This simplification sterilizes disability, making black and white discussions much easier. Disability, capable of tremendous opportunity, is not simple. Like most things in life, and medicine, disability is sharp, painful, humbling, as well as tremendous, giving, awe-inspiring. It is human. It is not easily distilled to an all or none discussion. Medicine sets the tone for this discussion and, to date, has done a miserable job.“
Dr. Church, given your experiences, what advice would you give to medical school administrators who are trying to determine how disability adds value to medical education?
So in terms of how to encourage schools and stakeholders to see this, you know, we've spent so much time, and even back when I was a trainee, we talked about diversification of medicine and how it had to be more, the fabric of medicine had to be more reflective of the fabric of the people we were providing care to. Well, I know that that has gone a long way in terms of more women, more racial diversity among medicine providers. And I think that that's incredibly important. But where I haven't seen schools quite shift yet is more attention to the fact that a significant proportion of patients are coming in and they carry in with them a disabling condition and how incredibly inspiring and barrier breaking it would be to have the person across the white coat be someone who is disabled in some way, because it would be more reflective of the patient and what the patient is looking for for information.
So I think schools need to encourage that, but that extends itself all the way into probably university experiences because, if you think about it, what you do in university and what sort of support you're given to develop drives whether or not you're even eligible for medical school, or a medical schools have to be more open to looking at nontraditional candidates. Candidates that might be slightly older, candidates that may come from different backgrounds, including disabled backgrounds, and not put such emphasis on things that don't necessarily reflect who you are as a human being and how you're going to interact with other human beings. Maybe it's different interviewing styles. But it needs to be that this is actually sought, I would even say as a characteristic rather than one that is discouraged and hidden.
I think what first put me on the path of actually seeing that there was a value in what I had experienced was my mentor in Boston, Ellen Perrin. And she is a developmental pediatrician who really was one of the founders of the field of developmental peds. But, as a fellow, my first year when I walked in, you know, I left the newborn intensive care unit and walked over to the developmental peds division to meet her and sort of look at my office. And in my fellowship program, my other fellow was hearing impaired and my whole first year of fellowship was spent with him and an interpreter who did sign language for all of our lectures.
But, the power of it was, it was the first time I had seen a program commit itself in such a way to providing accommodations for a physician who has gone on and was doing great things and has gone on to do further great things. It was because of her and her program that this young man and I crossed paths. So it can be done. And I think the excuses of money and commitment are a little bit shallow. I think that programs need to be creative about how they do it. They should actually tap into the individual and see what the individual can also accommodate themselves with. So I think that she was my first person who showed me in real form that it absolutely can happen and that it should happen. And she then kept pushing me to find my voice, recognizing that it was far more difficult.
You know, it's funny. When I put my JAMA piece out, I obviously did it somewhat anxiously, but some of the first emails I got were from medical students or residents that were thanking me for speaking and thanking me for having a voice because they hadn't felt comfortable having one. So I suspect that there is a whole tribe of us who are living with somewhat hidden conditions that make our lives more challenging. And I do hope that for those individuals, it empowers them to maybe feel a little bit more comfortable stepping into the light and letting it shine and letting it show, you know, what they may see as negatives, but what may be informing their practices’ very positive aspects.
I think for the trainees and the students, I would say that, whatever the story is that you're carrying with you that's driving you to want to do this career is valuable. It will create important direction for you and guidance. And what has to happen though is there has to be some development and some growth around how that message is shared, particularly with patients. Because while I think it's important that patients are aware that the fabric is more diverse, I certainly never want my care to be about me. My care is about providing better care to my patients. It never can be about my patients needing to do anything for me or in any way seeing that their outcome will be mine. Like there has to be some sort of a barrier, and that takes maturation and time to find that. As a resident or a medical student, I don't think I had the ability to understand that level of practice. But a program should hone that. A program should teach that young trainee how to live that message and how to make it positive without letting them step in landmines of making mistakes. So again, that should be a program's commitment to do that.
As always, we are so grateful for the Doctors with disabilities who come on to our show and make themselves very vulnerable in the process with a shared goal of the program, and that is to provide mentorship to those that are in the pathway to medicine and are questioning how they might navigate this space as a person with a disability. Whether you are going to nursing school or dental school or medical school or physical therapy programs, we want you to know that we will continue to share these stories as a way of providing mentorship and helping you navigate this space. I want to end today’s podcast with the words of our interviewee. She writes in her article,
“More is needed to appreciate the incredible opportunities that disability poses. More education is needed to provide the counselling families deserve: balanced, sensitive, thoughtful, and individualized rather than ‘objective.’ I am now providing this education, sharing my story and inviting trainees for counselling sessions. There is no recipe, just key ingredients of respect, awareness of stigma, possibility, and honesty.”
Dr. Church we thank you for all of the above. Thank you for listening to our podcast, we look forward to you joining us again next month.
From the DocsWithDisabilities team, thank you very much, Dr. Church, for sharing your valuable insight and perspective with our audience. And to those who are fighting against the systemic racial injustices in our country and around the world, we stand with you in solidarity and will continue to strive for equity and inclusion in our podcast, our work, and our daily lives.
In our next episode of DocsWithDisabilities, we meet with Dr. Erica Dwyer to discuss her experience with clinical accommodations and the decision to disclose her disability. We hope you will join us.