‘In Dialogue’ Episode 20: Rehumanizing Medicine by Addressing Ableism in Health Care

Introduction
CPSO presents ‘In Dialogue’, the podcast series where we speak to health system experts on issues related to medical regulation, the delivery of quality care, physician wellness, and initiatives to address bias and discrimination in health care.

Dr. Saroo Sharda (SS):
My name is Dr. Saroo Sharda. I’m a practisng anesthesiologist, in addition to my roles as a medical Advisor and Equity, Diversity, Inclusion Lead at the CPSO.

Hi, and welcome, everybody. Thank you for joining us “In Dialogue.” I’m very excited because in this episode, I am talking to Drs. Lynn Ashdown and Caroline Bowman, and we’re going to be exploring disability bias and ableism in healthcare. Dr. Lynn Ashdown is a patient experience expert and disability advocate, drawing from her experience as a patient and person living with multiple disabilities. She was close to finishing her residency in family medicine when she began, and continues to navigate, a complex journey as a full-time patient. Dr. Ashdown is involved in curriculum reform focusing on patient partnerships in medical education, as well as improving disability education. She’s working on policy and legislative changes to combat ableism and inequities for people living with disabilities. Dr. Caroline Bowman is a family doctor who has been practising in Wasaga Beach, Ontario for the past 17 years. She teaches topics related to mental health and behavioral sciences at McMaster Family Medicine. Dr. Bowman was diagnosed with multiple sclerosis five years ago and is beginning to explore the topic of disability and dig into her own internalized ableism.

We were very fortunate to have both of these physicians speak to us recently for a Dialogue article. What we’re hoping to do today is really expand on some of those issues and have a bit more of an organic conversation, so welcome to you both. Lynn, I would love to hear from you first. Just a little bit about you and really how this work began for you.

Dr. Lynn Ashdown (LA):
Thank you, Saroo, for the great introduction, and also to the CPSO for focusing on this topic, but also for inviting me to be part of the conversation. I fell into this by accident. It’s coming up on 10 years now, where I was close to finishing my family medicine residency, and as someone without any disabilities, with little experience as a patient, I suffered a cardiac arrest because of a previously undiagnosed congenital arrhythmia. That cardiac arrest actually caused a lot of collateral damage: a spinal cord injury, a moderate traumatic brain injury. I’m a full-time wheelchair user and that’s really how I came into this work. It wasn’t planned. It was sort of my way of taking what I had learned from working as a health care provider, albeit as someone that worked as a health care provider without a disability, but then how can I change? How can I take what I have learned from this very complex journey and sort of apply that to a broader level?

Dr. Caroline Bowman (CB)
Probably similar to Lynn, it was not planned. Not really something I had on my radar even before my MS diagnosis. My aunt had MS and was a full-time wheelchair user, so I did have experience with disability in my life but wasn’t really something that I learned very much about in my medical training.

In terms of getting involved with the community of physicians living with disabilities, like that’s a more recent experience for me. After my diagnosis, my primary challenge for the first few years really was fatigue, so sort of an invisible disability that I certainly would not have referred to as a disability. I definitely did all the things I could to just try to work around it, to not really have to tell anybody about it. It was something I just tried to manage. Then last fall, I had a more significant MS relapse, where I ended up using a wheelchair and a rollator for a couple of months, so had an experience of more intense physical disability.

Coming out of that, I’ve started to connect a little bit with other physicians living with disability. I’ve had to make some more drastic changes to the way I work, so I’ve had also more time on my hands to think about what it means to either live with a disability or to be a physician with a disability or to be a physician caring for people with disabilities. I’ve just read a couple of great books, listened to a lot of podcasts, Docs with Disabilities podcast. I’ve been fortunate enough to meet Lynn, Mike Kwan, who has done a lot of work around disability advocacy in Ottawa and have actually just ended up starting in a very small role, but a roll nonetheless at McMaster, trying to figure out different ways to help residents who are navigating life with a disability. So that’s sort of where I’m at right now.

SS: Thanks so much, Caroline and there’s a couple of things there that I hope that we can explore a bit more together in the next little while. One of those is really what you said around what does it mean to be a physician caring for people with disabilities now that you both have a different perspective of that because of your own experiences? What are some of the things that healthcare providers don’t always think about, or are not always aware of even when we may be working with patients with disabilities a lot? What perhaps we’re not thinking about and should be?

LA: Thanks, Saroo. This is where I’m actually going to call myself out. As a provider, before my accident and injuries, I really didn’t understand ableism or how deeply entrenched and ableist health care is, but also society. The reason I point that out is because it took me having to live it for my eyes to be opened and I don’t wish what I’ve gone through on anybody. What I hope is that I can take my lived experience and by me sort of saying, “Hey, I worked in healthcare and I’m fully admitting that I really didn’t know anything about it.” That doesn’t make me a bad person. We have unconscious bias and one of the biggest things that I would say is, especially in medicine, we often think about medical outcomes. We know that people with disabilities have poor outcomes than non-disabled patients. There’s a significant amount of psychological trauma that comes with that.

I’ve had instances where I’ve had health care providers treat me with wonderful respect and dignity; yet, I’ve also experienced where I have been so dehumanized and lost all dignity. We can’t just focus on medical outcomes. We have to actually think about the other aspects as well because in reality, those moments where I was dehumanized, that sticks with me much longer than some of the medical encounters. As physicians, we often think about what happens in the doctor’s office or in the hospital, but as someone with multiple disabilities, my life outside of the medical encounter is very much important in the medical encounter, and barriers to me receiving health care start long before I actually step into a hospital or a doctor’s office. For example, transportation and appointments that are booked that conflict with my PSW care, parking. So all of the barriers is not just healthcare, so we can’t just deal with one thing without dealing with the other because they kind of interact.

SS: I think we’ve heard that in so many other conversations that we’ve had with folks who are facing different kinds of oppression. Most of it is not actually about getting in the hospital. Of course, there are barriers and dehumanization that happens there or in the clinic, but all of the things that we don’t think about that happened before that encounter, when you’re maybe talking to the person at the front desk, when you are trying to park your car. All of these things, right, that we are not thinking about as the physician sitting in the clinical setting in the office, which is so important.

It strikes me as sort of also how we think about compliance, right? Somebody’s late or somebody didn’t do something. They’re automatically a non-compliant patient without really digging into all of these other things that are happening that we are not even aware of in that one-on-one encounter, so that’s really resonating with me what you just said. I want to get to Caroline’s thoughts on this, too, but you mentioned the word ‘ableism’. I wondered if you might tell us what your definition of ableism is because there’s lots of different definitions of ableism out there, but I’m really interested given your advocacy work in this area, how you would define ableism?

LA: I actually shy away from defining ableism because the more I try to define it, the more I realize how complex it is. I’ve read so many different definitions and I haven’t come across one that actually captures everything that I’ve been through, everything that I’ve researched, everything that I’ve read, from also learning from other people with disabilities, etc. I mean, ultimately, I think of it as oppression and discrimination against people with disabilities and sort of favouring, quote, unquote, normal or non-disabled people.

SS: Now, that’s really helpful and I think underscores that this experience is also not monolithic, right? Like the experience of all disabled people is not going to be the same. Just like the experience of all racialized people is not going to be the same, so I really appreciate you underscoring the complexity of that. And I guess one of the things that maybe listeners are thinking about is maybe that we also need to just remember that we’re also talking ableist systems because you talked about healthcare and society. So yes, there’s these individual prejudices that we have and biases and whether they be implicit or not, there’s also the structural ableism that very much exists in our health care system.

LA: All disabilities are kind of clumped into one category. That’s why I also try to stay away from defining it, because there’s so many different forms of disabilities and I cannot speak to so many other disabilities. You compare me to somebody else who might have the exact same disabilities, our experiences can be very different. I can’t speak to all the other disabilities that I don’t deal with on a daily basis.

SS: Mm hmm that probably leads me into the other piece that I wanted to dig into a bit, Caroline, which is that you mentioned in your journey so far, that you’ve had experiences of your disability being quite invisible – not to you, because, you mentioned extreme fatigue and things that you were experiencing, but perhaps were not visible to others and then you had something much more visible, and maybe the way that people visualize a disability, you know, you’re a wheelchair user, etc., for that period of time. Are you able to tell us a little bit about those two different experiences and maybe how that has impacted the way that you now interact with patients?

CB: I think we sometimes wear fatigue as a badge of honour in medicine and also really talk about pushing through it. It was really hard to wrap my head around having fatigue that – and I don’t even know ‘fatigue’ is totally the right word to explain it – but just that feeling of like my brain not being able to process things as quickly, really feeling like I was just getting more and more behind and then not being able to recover and the pushing through that I’ve really relied on for my whole life all the sudden, just not only not working, but just making things so much worse. And there was a lot of shame, I think wrapped up in that, too. How do we work through that? So Brené Brown, thank you to her for helping me with all of that. And I think also, you know, you can appear very normal at times, too. I also get it from the outsider, like, “Well, you don’t look like there’s anything wrong with you,” so it is harder to understand. I still am working on it, you know, the feeling of like, ‘Am I just being lazy?’ or like ‘Could I just push harder?’ You know that voice is just always still, still there.

And then the experience in the fall of having a much more visible disability and on one hand, in a way, like it felt easier to justify needing to make some more changes because you can see what was happening with me, but in another way, there was a lot of work around going out in public using a rollator or having my husband push me in a wheelchair. It was really different and now I have the experience of kind of coming out the other side again, where I, I’ve been lucky that this relapse has kind of run its course and I’m back to ambulating but aware of the challenges that go along with not being able to navigate the world on two feet. It’s like Lynn said, even just with appointments. Everything is, takes a lot of time and a lot of planning. You just don’t even know until you’re in that situation.

SS: Yeah and I’m thinking as you’re both talking about people with intersectional identities, right? Folks who maybe don’t have the privilege of a higher education or are new to the country or don’t have English as a first language, or are trans and disabled. There are so many other layers and pieces in terms of those intersectional experiences as well that I’m just thinking about as you’re both talking. Given that experience that you just delineated, how has it changed a) your interaction with your individual patients, if at all, and b) the work that you do with learners at the university, and you know, the systems wide work that you’re doing? How is that different now, if at all?

CB: Since my MS diagnosis, I’ve been really much more able and willing to advocate for disability time and forms and all that stuff for patients than I was before. And like Lynn said, I look back at my previous self sometimes and think, “Oh, I really missed the boat with that.” I don’t know if it was that I didn’t believe people, but I just don’t think I understood sometimes, you know, why would you need to change your work with that? It doesn’t sound like that is that bad. I really think I was an empathetic doctor before, you know, I don’t think I would ever have done that willingly, but I do realize that after going through, especially with the fatigue, I think I was much better at articulating on disability forms and really better at trying to actually ask questions to my patients and try to understand their experience of disability in a way that I could then advocate for them.

SS: That sort of more talking at an individual patient physician interaction level, but you’re starting to do similar work at the university and sort of, we’re now moving into how do we get physicians who haven’t had that experience of disability to think about the same things, right? To think about, “How do I fill in this form and how do I get my patients’ experience?” So what are you talking about with your learners?

CB: So I have had the most amazing teaching job for the last two years. It’s every Wednesday afternoon, and I teach first- and second-year residents. It’s a small group learning environment, and it’s longitudinal, so I’m with them throughout their entire family medicine residency and that’s been a space where we really can talk about all of these topics.

I think empathy is such an important one. There’s different doorways into empathy, whether it’s cognitive empathy, where you’re really trying to understand someone else’s story and recognizing that just because I may have an experience with fatigue, that doesn’t mean it’s the same as your experience with fatigue. So let me understand that more, like using that cognitive piece. So I think we work on, on the empathy piece. I think stories are so important. We can learn so much by taking the time to hear about people’s experience.

You know, hearing about Lynn’s story, I think that’s going to be just such an important part in helping our residents learn. There’s going to be modules, I hope, great teaching modules coming out through CIPD [the Chartered Institute of Personnel and Development]. So I think those things are important, but I think we can never lose track of having those conversations, hearing the stories, having opportunities to kind of really reflect on our own internalized ableism. We build space for that and like, that’s been a real joy for me.

SS: As we transition from being that learner to being an independent practice, how we maintain that given the time constraints that are in the system.

CB: Yes!

SS: And again, I think of that as just an example of how ableist our system is because I think of my brother who has an intellectual disability. 10 minutes isn’t gonna work for him. And we also know that unconscious biases tend to amp up when we’re tired and stressed and time pressured and so we’re sort of in this vicious cycle, right? And it just as you’re talking, it strikes me as what a beautiful space where you can share story and what happens to that learner when they go into practice when they have 15 minutes to do it.

CB: Yeah. It’s such a huge systemic barrier to empathy really at times.

SS: Right, absolutely. So Lynn, I wonder if you could talk to us a little bit about some of the broader policy work that you’ve done and some of the other advocacy work that you’ve been involved in, which is really thinking about that systems change. Can you talk a little bit about that?

LA: Yeah. Thanks, Saroo and thanks, Caroline, for all your insightful comments. The first thing I got into before disability was patient partnership and sort of including patients as an equal stakeholder in their care. And so Caroline, you had previously referenced Brené Brown. I’ve learned so much from her as well about embracing vulnerability and that’s the birthplace of change, but one of her quotes that I always reference, especially in medicine, because when we think of research, we think of evidence-based research, we want quantitative values, etc., but Brené Brown, she says, “Stories are data with soul.” So this is where my initial work of patient partnership, which is sort of including the lived experience of those who are actually experiencing it is so important, but then, especially now when we’re dealing with people with disabilities, really committing to hearing the stories from those that are directly impacted. I can’t underscore the importance of actually just listening to what our patients with disabilities are telling us.

We have to acknowledge the issue before we can change anything. It’s okay to say we have an ableist healthcare system. We have an ableist society. I really want to destigmatize any guilt that people might have that would shy them away from saying, “You know what? I really actually am uncomfortable caring for a patient with a disability.” And that’s okay because they didn’t teach us about that in medical education. To this day, it’s mostly the medical model of disability. We just think of pathology. We don’t think of all of the other issues and so increasing teaching within medical education and the scope from undergraduate right through to continuing professional development and beyond a medical model and just the pathology or disease, but the actual lived experience. The social constructs that contribute to that as well. Thinking about language is so important.

You mentioned compliance earlier. Most patients actually that are, again, quote unquote, non-compliant, it’s actually the fault of the system or the fault of society usually, right? But rethinking language, having greater exposure to people with disabilities because part of the problem is, is if in undergraduate medical education, you’re not exposed to anybody with disabilities, then you’re not breaking down your unconscious bias. That includes bringing in and learning from doctors and patients with lived experience with disability. From an institutional level, while we’re getting a little bit better, I’ve consistently noticed when we talk about EDI (equity, diversity, inclusion), I see sort of conferences and learning webinars, and it’s largely excluded disability. I have noticed a bit of a change in the last sort of year, year and a half, but disability and ableism is part of the EDI discussion.

Let’s audit our hospitals and try to find how many barriers exist. I think we sort of assume that a hospital might be accessible. Every time I go to a hospital, I encounter barriers. Mostly for my wheelchair. It’s really important. Our workforce should represent society and if 20 to 22% of society has a disability, well, then our workforce should actually represent that. We know that we have the formal curriculum, the informal curriculum and the hidden curriculum, but just having more exposure to people with disabilities will actually informally improve the education because then it will actually break down some of our attitudes and stereotypes just by observing other people that we might think may not have been able to thrive in that environment thriving. Yes, it will better serve all of our patients, but it will actually then improve the education of those within healthcare, which ultimately leads to better health outcomes for not just our patients with disabilities, but all patients. I think the biggest thing is actually more exposure and making space for people with disabilities that work in healthcare and that experience the system as well.

SS: As you said, we are a microcosm of society and healthcare and this is a societal issue and therefore a health issue, too. And I also just wanted to pick up on what you said about the accessibility of clinical spaces and how you said that it’s not just always an accessibility issue because you use a wheelchair, but, you know, I’m thinking about how much sensory overload is often in our clinical spaces, and how that can be very challenging for people. Just things that we may not think about that we need to really start to wrap our heads around, in terms of a system change.

Caroline, I thought what you said earlier around fatigue as a badge of honor in medicine just resonated with me so deeply as a fellow physician and I wonder if you could talk about whether you think that that is one of the big barriers to actually recruiting more people living with disabilities into our medical training system?

CB: Definitely, I think the, the way our training is set up is not conducive to energy management and I think right now, there’s definitely barriers to changing it because a lot of the system functions based on having these bodies in hospital that are from a service perspective, not just a learning perspective. Whole list of things that people are going to do way better when you can manage your energy and prioritize sleep. So I think it is definitely a barrier for people applying and the way the system is set up, even if people can be accommodated in medical school, we’re not doing very well accommodating people once they get into clerkship or residency. So I think there’s a lot of work to be done around that.

SS: One of the policies that you were working on, Lynn, and perhaps you were involved in too, Caroline, was really looking at how do we support physicians in the workplace who are living with disabilities and that we really haven’t had any guidance around that outside of maybe what exists in HR, etc. So I think actually, what you’ve worked on is the first Canadian policy that we’ve had. Can you speak to us a little bit about the main sort of highlights of that policy and what you think it’s important for people to know?

LA: Sure, thanks. Thanks, Saroo. Yeah, so Jerry Maniate and I, we co-authored Canada’s first position statement on the importance of disability inclusion in medical education and health care professional education. It was sort of in conjunction with the Equity in Health Systems Lab and CAPD (the Canadian Association of Physicians with Disabilities). We really need to prioritize right from admission to undergraduate medical education because even getting into medicine or any health care profession – it’s already biased. Like even to get the grades that you might need to get into medicine. Well, maybe it’s not possible to have a 98% average because you’re somebody living with multiple disabilities. Does that exclude you from being a phenomenal physician? I’d say no because it’s that ability to be compassionate and empathetic and all of those things that someone with a disability has likely interacted more with the system already. They’re coming into that with that knowledge.

And so there’s so many barriers along the way. So before they even apply to medicine, they’re already sort of disadvantaged, but then even if we admit them, we can’t just admit them. We have to set them up to thrive. And so often, it’s less of an issue potentially during pre-clerkship because universities tend to have disability resource professionals, but once you get into clerkship, disability resource professionals actually can’t really help because they don’t understand the nuances of health care and clinical work, etc. In the States, they’ve actually started having a course that helps disability resource professionals then sort of sub specialize within health care professional education, so that they do understand the nuances of clerkship, but it also means we need to reevaluate our technical standards. So a lot of our technical standards in medical education, it focuses on how we do something. So we think that there’s one singular way to do a suture or there’s one singular way to start an IV, but a) technology has advanced. It’s less about how to do something and more about what the core competencies are and it’s not about how you do it. It’s that you can do that core competency at the end. It’s less about the how.

For people that might not understand that concept, there’s this wonderful video that I saw a young woman who doesn’t have arms and they show her putting her makeup on and then driving a car just with her feet. If you had intrinsically asked me whether it would be possible or not for somebody without arms to drive a car, I actually would have said no. People focus on ‘Well, there’s only one way to drive a car,’ but there actually isn’t. It actually doesn’t matter how you drive it, as long as you’re safe on the road and so that’s the same idea that we need to approach medicine.

Also Caroline mentioned this idea of this badge of honor. How do we define a good medical student or a good resident? Somebody that never calls in sick, that does extracurriculars, that does research and all of these things. Well, I know, as someone living with multiple disabilities, it takes a lot more time to just do the basic activities of daily living. So again, we potentially might be able to thrive just clinically, but we can’t do research and extracurriculars. But then that impacts how you match and then that impacts your career, etc. It comes down to a culture change in medicine, but it really does need to start, I think, pre-medicine, but definitely at least in undergrad and then that will have a trickle effect through the entire spectrum of healthcare practice.

SS: We need to redefine excellence, because we keep talking about how we want excellent candidates, but we’re never willing to actually think about what does excellence really mean? Because maybe it doesn’t mean doing five extracurricular activities and having a research paper in JAMA before you’ve even stepped foot in medical school. That really resonated with me. If there’s one piece of advice you’d like to give to your fellow physicians around this area, and in this space, what would it be? What would you want them to really, really think about after they’ve listened to this?

CB: I guess the one thing that’s jumping into my head right now is just remembering that we are all human beings who work in the field of medicine. This stuff that we’re talking about is not just for this, you know, small group of physicians living with disabilities. Like this is actually for all of us because everybody listening to this very well could be or will be part of this group at some point throughout their career. So starting to think about it now and I don’t know, grappling with some of those difficult thoughts, I think is really important.

SS: You both used the word ‘dehumanizing’ in different ways, in different points of this conversation and we also talked about the importance of stories and it makes me think of a quote, “Stories help to rehumanize us.” Stories rehumanizing us really is something that I’m kind of thinking about and probably will continue to think about, thanks to this conversation. And what about you, Lynn? One last thing to leave folks with recognizing that we have physicians and maybe patients listening as well.

LA: Yeah, sort of, to echo the rehumanizing aspect of things. Medicine is actually becoming more and more complex. We think that the answer to a more complex healthcare system would be more specialization, but the answer to that is actually generalism, but also then rehumanizing medicine. At the end of the day, doctors are humans taking care of humans. When I moderated a plenary on ableism for the International Congress on Academic Medicine, I ended with this quote and while it wasn’t written for the context of healthcare, I actually think it links beautifully to it. And it’s by Rebekah Taussig, she’s an author of a book, Sitting Pretty. She says, “Instead of disability as the limitation, what if a lack of imagination was the actual barrier? It’s our affinity for familiarity that traps us. Our impulse to adhere to that which came before.”

SS: Wow, that is so powerful and what an apt way to end our conversation. I want to thank you both so, so much for being here and being so open and vulnerable and sharing your stories with us. So, thank you so much.

LA: Thank you. Thank you for having us.

CB: Thank you.

Conclusion
Thank you for joining us. Please visit CPSO Dialogue for more in depth discussions about health care.